Reflux and Colic Mums Come Chat with me! Support thread [Archive]

Nowhere

15-02-2009, 14:14

HUGS hun welcome to the reflux roller coaster it totaly sucks and there is no escapeing it till bub decided its time GRRRRRRRRR, I truely hope that the hell of reflux is short lived for your family and that your bubs improves really quick

Neally 3 years on we still on the reflux roller coaster and DD will be for her whole life, dispite a maximum levels of all medications, an antireflux operation ( fundoplication) pyloryplasty, and a feeding tube for contiuos feeds she continued to reflux so much so that she is now fed into her bowel and has a gastric drain 24 hours a day, and some how she still refluxes all day everyday only difernce is now she reflux gastric secretions and bile as apose to feeds

GORD sucks and there is not enough known about how bad it can be so many many drs have NO idea of what to do and how bad it really is

I truely hope things improve for your little one and you soon

madboysnmummy

15-02-2009, 14:31

:eek: ill stop complaining now, wow you have had a roller coaster

how are you and the rest of the family coping? And did you initially have trouble getting the doctors to take you seriously?

I cant believe how distressing it is and with all the technology these days reflux is just accepted as a well deal with it sort of disease.

I actually had a gp tell me with ds1 that he didnt believe reflux is a disease and that he thinks most babies that vomit are being fed too much and its the bodies way of getting rid of what it doesnt need.

so there you go hey!

Nowhere

15-02-2009, 22:57

hun dont stop complaining onm my acount go ahead I know all to wel how much refluc sucks

Did it take a while for drs to take us seriously umm yer I was told i was paranoid first time but but in actualy fact DD had no opening from her tummy to her bowels, So yer was hard at first wel for the first year really they knew she had servere reflux ( gord) but didnt realise how bad it was not until they did the right testing then they new how bad it was but couldnt fix her

What helped us the most was finding a great dr that new that mikis issues was more then the average reflux was stil a hard road still is but we now have a great medical team

there is SO little known about how bad reflux is even amonst drs and even mums, if your child has servere reflux be prepared for a rough time

:hugs:

madboysnmummy

16-02-2009, 09:56

thats so good you have a great medical team for her

i think the worse part for me is the constant crying. I can handle the vomiting and change of clothes etc, but to not be able to stop your bub from crying or even hold them because they are arching back and distressed is just depressing.

there must be so many degrees of reflux too cos my first wasnt this bad - unless it was so bad i blocked it out from my memory :laughing:

Nowhere

16-02-2009, 10:01

Yes the screaming is horrible not nice at all to here your little one in so much pain, Something that I dont think you ever get over

There are huge varience of reflux thats for sure, we are unfortunately on the not so great end of it

reAllytee

16-02-2009, 10:43

I think as MM said that because there are so many varying degrees of reflux & because most only see the spewy babies that are say fat happy chuckers thats what they assume reflux is all about ...

Little do they know about the baby who refuses to sleep at all & screams a scream that is unlike anything else !

I have had a friend told by a doctor that there is no such thing as reflux in babies :no:

Ive also heard things like " it doesnt hurt them " & " dont worry they will just scream themselves to sleep " ....

It used to upset me sooooo much some of the things I was told along with bringing things into like I was doing something wrong or my mental health was apparently such an issue that I was imagining it.

It sucks.

Reflux is just damned evil !

My little guy was on both Losec & Zantac along with a pro-kinetic but for the last month or so he has only been on Zantac which is HUGE for us ... He is now 18mths & we are starting to see the light ... Now if only his bowel issues were that simple !!!!!!!!

Hang in there :hugs::hugs:

moftwo

16-02-2009, 11:53

Hi there

i too am on the reflux roller coaster of life :laughing:

our story - my DS would scream almost all night, cat nap during the day, constantly be on the breast all evening. and as soon as he would roll on to his back - no more sleep. Biggest problem is he almost never spewed. i went to every doctor in my area to be told, he's just a baby - they dont all sleep, he's over tired, you stimulate him too much, be firm, try sleep classes, etc.
In the end, i took him to a new GP and sat him on the desk. He was screaming, i was crying and i refused to leave unless he agreed that there was something wrong with my child. he was 7 months old bu this stage. I had a total of 3-4 hrs max sleep a night and a 2 year old. :hissy:

So he referred us to a gp - put us a numerous different formulas, etc. Ds tried Losec - worked brillantly for 3 months, then they trialled him off because he was walking - BAD IDEA. After day 3 off Losec we were in hospital with severe ear infection both sides and refusing all food.
Long story short, we went back on Losec, trialled off again just after 1st birthday, back on. We have had a ph probe and an endoscopy. End result - wait until he grows out of it. I felt Losec wasn't really doing much so i approached a doc about adding Zantac. He gave us a script for Zoton and i will never go back! it is an amazing drug for my son!! he is the happiest he has ever been. He also suffers from dairy protein intolerance and certain foods trigger a response in his reflux, but generally now, most days are good.

It has been a horrible time for me and i am glad i came here as well as some other forums to get the support i needed that i couldnt get from my gp and other doc's.

we have an appointment at paed next month and they are talking about trialling off again - not real happy, but we'll see!!

monkeytoes

16-02-2009, 11:55

Well, our story is no where near as bad as the others in this thread, but DD2 has reflux and while it's only mild I have always been annoyed that nobody took it seriously to begin with. I suspected she had reflux at 8 weeks of age, but when I voiced my concerns to the GP, Lactation Consultant and the CHN they all dismissed it and told me I didn't have enough milk. I ended up taking prescription and herbal medication to increase my supply, but DD would just pull away and would starve herself instead of put herself thru the pain of feeding. It wasn't until I took her to a Paed at 6 months for Failure to thrive that she was eventually diagnosed with reflux:rolleyes:. It's her first birthday in 10 days and she's only just started to comando crawl, she doesn't say anything yet and still spews all the time but I am happy she is gaining weight now:yelclap:.

Good luck to the other reflux bubs (and mums), hope it gets better soon.:hugs:

madboysnmummy

16-02-2009, 14:20

thanks for sharing your stories girls, it is so hard isnt it especially when you add another child into the equation. When ds1 has it I was able to devote everything to him, but now I have the other 2 it seems so much harder. Especially when you cant but bub down.

Atm we are holding him from about 4pm till 12 when he does most of his crying. Before we increased the dose of losec he cried non stop and only slept for 2 out of 24 hours. I was at breaking point! Thanks god the losec has helped him sleep. I cant imagine life without it.

has anyone found a gastro enterologist helpful? I have my first appointment with ds3 on the 10th of march. I am hoping they can help.

I have also heard that its not painful - but how can it not be when they have there fists clenched, toes curled and they are arching back throwing themselves around and crying?

i bet you girls are sick of the "at least they will grow out of it statement!" If I heard that one more time imm gonna head butt a wall :laughing:

beachmummy

16-02-2009, 16:16

Hi Erin
Sorry to hear that you are still having such a difficult time with Owen. :hugs:

Unfortunately we have had no luck with the Losec or anything else we have tried :(

I'm not complaining though, because I think I have it much easier than most because Ruby will actually sleep a four hour stretch at night (which is my lifesaver.)

I can't imagine how you are coping with the constant screaming during the day and the sleep deprivation at night.

I've basically accepted that Ruby needs to spend the majority of her day upright - so she lives in her sling.
I can put her down to sleep on her belly as long as she has gone to sleep upright IYKWIM.

I DREAD getting into the car with her because the angle of the car seat is about the worst it could be for her reflux :( so the school run has become very stressful as she screams the whole way.

Anyway enough blabbing from me :ecomcity:

madboysnmummy

16-02-2009, 16:56

oh no beachmummy in the car too! ds1 cried everytime thankfully owen just whinges not cries in the car since I got a musical mirror.

well Im still in denial! I just dont want to accept that this is it :laughing: constant discomfort just doesnt seem fair for bub. Especially hearing him coughing and spluttering as he chokes on the milk and his face go red from the burning etc

After having a "normal bub" and seeing the difference I cant believe doctors just make you accept that this is how it is and deal with it. I guess ds1 was my first I didnt know any different so I just went along with it.

How is everyones partners dealing with the constant crying. My DH gets all churned up from him and is really uncomfy with him cos he cant hold him

well its all started already everyone is crying! best be off x x

adinic

16-02-2009, 20:23

nice reading everyone stories and to know that if you need someone to talk too, just come in this thread because we all know what eachother are going through.

My son is 5mths old, I knew he had reflux when he was week old - went to so many GP and no one listened. It was hard because he had silent reflux, so little bit of vomit but not alot and one GP just said, he is a baby he will cry and cry thats what babies do. I responded by asking if he had a baby, he said no, I then said you have no idea what I am going through and how it feels like to listen to your baby cry out of pain none stop all day long. I made sure that I filed a complaint with the medical centre about him.

After changing GP until I found one that listened Nicholas was already 2 months old, he basically said if losec is not working you need to see paediatrician.

It was a bit of a round around, with increasing the dosage of losec and it still not doing anything, then one day I rang office and just cried - I hit rock bottom and said I need to see paediatrician now. He changed formula to neocate (broken down formula no cow, goat, soy) and started him on zoton. He was a different baby pretty much after his first feed, he no longer did these poohs every 2hours where it would go right through huggies nappy, his outfit and onto me (oh that was normal I was told).

Now he is almost 5 and half months, we still have bad days and he can still be a unsettled baby but he now smiles, laughs and is more happy.

Those first 4 months of his life where like I went to hell and back, I just dont know how I did. My husband was not supportive at all, he just could not handle him crying all the time. We had alot of tension and just not being able to relax when hubby was home because I was so nervous about Nicholas crying. It was so hard on everyone in our family, my 3 year old daughter was my rock, she pulled me through it by always being positive about her little baby brother. When I was crying and just didnt know what to do, she tried to help by talking to him and telling me its ok. I knew it wasnt but I needed to hear it from someone that it will be ok. Even now if he starts to cry, I panick and start to sweat, it still affects me. Sorry that it was long.

madboysnmummy

16-02-2009, 20:48

reAllytee

17-02-2009, 00:54

I spent 5 long hard months fighting doctors left right & centre.

No one would listen & no one would do anything ....

I had GP's bringing into question my mental health or saying that I was making him sick. We did get some Zantac after a huge hissy fit of mine but I found out later the dosage wasnt anywhere near enough.

G was always losing weight, would scream all day & nite, would vomit nearly every feed across the room ... Seriously I used to cover myself & the lounge in towels to try to stay 'clean'. He stained everything clothes, the lounges & would also leave dried blood on his sheets & bibs. When he did finally sleep he would be so out to it you couldnt wake him & he would sleep for 6-8hrs straight even after only feeding for 10mins. He dehydrated all the time so we spent most days back & forwards to the doctors but it was always me, always my fault & was pushed to use more formula as I was b/f which didnt even help it was exactly the same problem. His poo was foul beyond description & he always had blisters & sores all over his nappy area.

But hey it was all me :rolleyes:

I saw one Paed who advised it was just behavioural issues ... Yeah a 2mth old has behavioural issues !!!

We finally found what I thought was a decent Paed who upped his Zantac & this saw a little relief for a few weeks until it all went downhill again & we were put onto Elecare because he wasnt sure but had an idea that maybe he didnt just have an issue with protien but had LI also.

Things were ok but I knew something still wasnt right but the Paed just shoved some Losec at me saying just use that all will be fine. Worked out that the Losec tablets have an ingredient that caused an issue & the Elecare wasnt staying down anymore as well as him starting to lose weight again.

The Paed ended up being really rude & spoke down to me like a moron ... I had a friend with me who knew what I was going through & was furious so she booked an appt with the GI her sons see .... 6mths time was the earliest AARRRRGGGHHHH !

It took another nite of G screaming & me just crying all the time that my mum & sister said they wanted to take me to the Childrens Hospital & DP agreed ....

The next morning is when things totally changed for us !

We ended up being admitted into hospital & the GI was brought in & got things sorted for us.

We changed to Neocate which works wonders for us, started on liquid Losec, Zantac & E-mcyin as well as Movicol for his bowel.

Things havent been perfect but they have been a hell of a lot better & we all cope.

Seeing the GI was amazing ... I didnt even have to say I needed help he knew I needed it ! We stayed in hospital for 10 days getting his bowel sorted & GORD under control.

I am so glad he listened as I dare not think of where we would be today because as it was we were lucky that G survived as he did when left to suffer for so long. As the GI also said he has to fix these kids that the GP's ignore or pass off as nothing & often the outcome isnt pretty ....

Reflux can be much more serious than many realise !

Sweetcat

17-02-2009, 10:29

Wow....it seem there are so many of you that have been through the hell that we have also. Our little FRankie has really bad reflux....no spewing just sever pain and screaming and refusing all feeds. We had to carry her upright day and night (literally had to take it in shifts across the 24 hours)

We had the exact same experience fighting with doctors who wouldn't believe there was a problem. In the end we were at the paeds rooms every day trying to get some answers. Family and friends also didn't support us as they just thought we were being a bit stressed or that perhaps our baby was naughty and manipulative!!!! I ended up with severe PND due to all the stress, no sleep and constant shrill screaming.

We tried Zantac which did nothing and are now on losec. At first losec didn't work as her dosage was just not enough. We now give her 40mg a day and we are finally seeing a happy baby. Still BF and have started her on solids which is going well.

Our story is no-where near as difficult as some of the others posted on here but I think it's important for relux mums to stick together and offer support. It is very tough and no-one can possibly begin to understand it unless they have experienced it themselves.

Best of luck to everyone out there. Reflux does really suck but we need to support each other!!!

madboysnmummy

17-02-2009, 10:46

:yes: girls we need to stick together and help each other out. It is such a tough mind game especially when people lokk at you as though you are doing this to your baby and tell you there is nothing wrong.

Im off to the paed lets hope he can give me some more help and advice :fingerscrossed:

p.s I love the name frankie :)

adinic

17-02-2009, 13:29

wow adinic

reading your post gave me goosebumps because it was like reading my life in your eyes.

I just wander how many mums are quietly going about things going thru hell and having no one to talk too about it. It is a real alone realing and a helpless feeling. A few weeks ago I was actually ready to give my baby away to someone because I felt like I was the cause of him crying. It really gets to your mind and I felt so scared when I had a huge urge to bang my head against a wall!!!! And OMG I am definately not like that or had mental issues in the past.

I really feel for the mums with reflux babies it is hard work mentally and physically.

What is zoton? is it like zantac?

Thank god for bubhub or I would have lost it a long time ago! :yelclap:

Zoton is nothing like zantac, zoton is almost like losec BUT it seemed to have done the job for Nicholas - it is powder form in sachets and its pink with little pillets. You mix with water and Nicholas loves to have it where with losec it was a battle. Zoton is more sweet and nicer taste. Zantac you can buy over the counter and I found it did nothing at all.
I forgot to mention that when my son finally settled down and was not in pain, I had time to think about how it all was for me, for us and one day I was holding Nicholas and started to cry outloud. I was so upset at myself, I was looking at him and wondering how he felt the times that I HAD TOO put him in his cot, because he was crying all day and just walk out of the room crying........ I just started to feel very guilty and now I find myself not being able to stop kissing him and hugging him. THats what made me so upset that when he was born till about 3 months I just couldnt really hug and kiss and enjoy him, sometimes I couldnt even pick him up. I did sometimes wonder if having him was the best thing for us, and now I just feel so bad because I had all those thoughts.

It is really hard, and yes it doesnt help when your told that it will get better because you know it will one day but in the meantime it is really hard. It was the hardest time of my life, and unless you have lived through it, its hard to know whats it like - his cry still affects me, I worry that he'll go back to how it was. I couldnt really talk to many people, my mum made it about her (sorry that she cant help :ecomcity::ecomcity: and maybe I need to hold him all day - like yeah thats great who will wash, clean, look after toddler???) and MIL was worried sick calling all the time and I couldnt really talk to hubby, he was not dealing with it well and friends and neighbours just kind of made me feel like Im going on about it and maybe making it sound worse. One friend did help, her daughter went through it, but her hubby was very supportive so she didnt know whats it like to deal with it on your own and then also deal with your hubby.

Thanks for reading and sharing, I do feel better when I talk about it.

madboysnmummy

17-02-2009, 16:35

wow adinic, you are writing what I am thinking. I too am terribly guilty of all the things you wrote. I dont like people to worry about me so I am careful about what I tell family. And DH isnt coping well with the constant cries.

Well !! im officially sick of hospitals, when I went last week I was told I was over feeding bub and to cut back his milk to 150mls, that was the reason why he vomits so much. Now today when he was weighted he has lost 50 and his head has shrunk!

I now have to give 200mls 5 times a day and cut losec back to 10mg because apparenly 20mgs is way too much which is why he has terrible diarrhoea.

I explained I was worried about the amount of vomiting and the paed now said to add gaviscon infant to the bottles and he said if no better in 3 days to ring him back.

I just cant believe how a gp, hospital paed and my paed all have different things to say and ways of dealing and treating reflux.

Its no blimmen wonder us mums are so confused when none of the doctors can agree on anything :laughing:

Gosh I hope the gavison helps because I cant bear to watch him continually choke and splutter all day and night.

no wonder the poor bub has been crying so much he must be hungry! Its funny once again doctors make you feel like your doing something wrong - all week i have been feeling like its my fault he was vomiting so much because I was overfeeding him and it turned out to be exactly what he was suppose to be getting :hair:

madboysnmummy

17-02-2009, 16:40

Family and friends also didn't support us as they just thought we were being a bit stressed or that perhaps our baby was naughty and manipulative!!!!

OMG I get this too. Or people talk to your bub and say - look your smiling theres nothing wrong with you is there. Or your just a sooky baby and you know how to get your own way already. Its like yeah he knows at 2 weeks of age-whatever!

reAllytee

18-02-2009, 00:48

Zantac isnt over the counter :no:

Gaviscon & Mylanta are though ....

Gavicscon is a thickener so will help bubs hopefully keep a feed down but be warned it may cause issues with constipation ... 20mg was quite a lot for his age & possibly his weight which is what they go off.

Many doctors have many varying views on reflux which is why its hard to find help let alone agreeance on the way things should be handled.

I am actually in agreement with the other doctor in regards to lowering the amount he takes at each feed ... Not so much cause you are over feeding him but because it means there is more of a chance with him keeping a smaller amount down.

When G went back onto oral feeds we got him up to 130mls which was our cut off for him & it ended up to make sure he got the right amount of fluid intake ( he needs a certain amount not just like any other bub but to make sure his bowel works properly ) we had him on 8 feeds a day & that was at 7mths ... This didnt change until he hit around 15mths when he started taking more water & he could tolerate taking 150mls which he now has 4 times a day.

Your Paed should have an idea of where to go from here but really if you feel that things arent right & that things arent improving get a referral to a GI .... They make a world of different IMO !

madboysnmummy

18-02-2009, 08:24

yeah I think I agree with the doc at the hosital too, increasing the feeds just causes more vomiting even with the gavoscon thickener. I would be happier giving him more feeds more often because he acts starving after about 2 hours anyway.

the first available appointment for the g/ent isnt till march 10th so I guess I just need to catch all that puke till then :(

adinic

19-02-2009, 21:22

Zantac isnt over the counter :no:

When I bought it for Nicholas back in september 2008 the chemist in brisbane said that I dont need a script to buy it, dont know if that was right but yeah I didnt use the script when I bought it (zantac liquid).

reAllytee

19-02-2009, 23:51

When I bought it for Nicholas back in september 2008 the chemist in brisbane said that I dont need a script to buy it, dont know if that was right but yeah I didnt use the script when I bought it (zantac liquid).

Ok ive worked out why there is a difference in strength ...

Zantac comes in different strengths in different countries. In United States 75 mg and 150 mg tablets are available over the counter, in Australia 150 mg and 300 mg tablets are available in small packages, however for a larger strength or a bigger package prescriptions are required.

Over-the-counter versions of Zantac are also available for relieving and preventing heartburn associated with acid indigestion and sour stomach. However, the prescription version is still needed for treatment of ulcers, esophagitis, GORD, and other conditions that require monitoring by a doctor.

madboysnmummy

20-02-2009, 00:36

beachmummy

20-02-2009, 10:11

reAllytee

20-02-2009, 10:55

did anyone else have success with gaviscon sachets used for thickening? it has reduced the vomiting but increased the crying and straining. He is still pooing constantly every time he wakes and feeds.

oh gosh i feel like im going back wards since seeing the paed. did anyone use zantac without the doctors recommendation?

im thinking of trying it at night when he starts crying non stop from 4 til 12/1am

gosh guys im not enjoying this much

I found anything thickener increased our problems because my little guy has GORD but also has bowel issues which when his bowel is playing up it increases the problems with his reflux iykwim.

A thickener can block the bowel which once it does so means that the full bowel can then push up against the stomach causing everything to get squashed causing bubs to reflux more.

For the time block you are talking about you would need to give the Zantac dosage at midday so that it started in enough time to run from 4ish but also you may need another dose in the late afternoon to carry through all nite ... You really need to speak with your doctor about the correct dosage as it goes on weight & about the best times to give the dosage. We had to administer it 3 times a day but now that G is older & heavier he has a larger dose twice a day.

When you are saying he is pooing all the time that can be normal but its the consistancy etc that can be key ... Does it have any mucous in it & what is the colour ?

Nowhere

20-02-2009, 11:36

hi guys sory ive been absent from the reflux chat thread for a few days, I try to kid my self im so used to it that i dont care any more but yer its peeing me of again

Well today we are back down to the hospital for a pead check, we have these atleast once a week sometimes 2 or three as well as the specialist ones as well so yer we there alot, Anyway Miki just got her drip out about a week ago she had the drip in because her stomas was infected with not one but 2 difernt bugs grrrrr once of them being staph, anyway the infection was just clearing up and we got the IV line pulled out after 10 days or IV abs, We caried on treating it with the antibiotic creams ,and stoma paste and no sting wipes and only cleaning it with saline so doing eveything right

And youknow what its freakin infected again, the G tube is red and inflamed and her J line is also red but also has presure blisters around it from where we have to tape the tube down and thats all infected to

I am so so so so hopeing that they alow for her NOT to go on IV antibiotics for this, as if she does she then cant use ehr new scooty chair again, which would really suck as she has only just got her freedom

And you know what these stomas are because of stupid reflux and bowel issues, I hate it i hate it I hate

beachmummy

20-02-2009, 12:12

Oh Amy you poor thing :(
I know it probably doesn't help but I just wanted to send you some of these :hugs::hugs::hugs::hugs:

Sweetcat

20-02-2009, 14:17

Hang in there Amy....it sounds really like you have it the toughest out of all of the reflux mums. :fingerscrossed: that she doesn't need to have the antibiotics through IV. Big :hugs: to you and your little one. I'll be thinking of you.

madboysnmummy

20-02-2009, 15:10

Hi ladies:wave:
My day so far (thought you could relate :o)
- Feed Ruby at 6am she sleeps till 7
- get her out of bed and she spews all over me, herself and my bed.
- change Ruby, change me, strip the bed
- bring her downstairs so i can have breakfast - power vommy all over herself and the rug
- change her, clean the rug
- get into the car for the school run. Ruby vomits and chokes continuously for the entire trip to school. She is drenched, so is the car seat.
- get to school, change her, clean the car seat
- go to take my six year old to his classroom and another power vom over herself and me ( I'm soaked through to my undies :laughing:) - no more spare clothes for me or her so Riley has to take himself to the classroom:(
- stick her back in the car seat and she immediately starts puking into her throat which = pain which = screaming and choking
- screams the whole way home
- get home change her, change me
- another puke down her shirt, strip her off and cant be bothered to dress her again!
- sit down at the putey to type this post and she's just puked on my leg - again!
- the funniest thing - its only 9am

OMG!!! yep sounds like my kind off day. You should turn that into a pamphlet for all the new mums and call it a typical day with a baby with reflux.

I think we all need to invent trendy reflux proof outfits for us and bubs. spew proof.

i just came back from playgroup and alot of mothers looked at my baby in disgust as he puked over everyone and everything.

Hello!!! no explaining needed he has reflux

thanks god my mum came along to look after him for me.

Mikis mum - I dont have it anywhere like you do, but i cant see me ever getting use to reflux. I thought on my second child with it I would find it easy but no its actually harder. You are doing a brilliant job with your girl! Your a fantastic mum and i am so sorry you are having such an unlucky time with your girl. Thank goodness for the smiles they give you in return otherwise it would be the most un rewarding job ever.

I hope she doesnt have to have antibiotics again - just what she needs for her upset tummy :(

:hugs: I hope things improve over the weekend.

madboysnmummy

20-02-2009, 15:17

When you are saying he is pooing all the time that can be normal but its the consistancy etc that can be key ... Does it have any mucous in it & what is the colour ?

he poos everytime he wakes up, with feeds and after feeds he moans groans and strains all the time especially while he is feeding. Most of his poos are a green mucousy, but some are 'plasticy green too' his bottom is so sore becuase he has had terrible bowels for about 4 weeks now. the doctor thinks it was becuase he was on a too higher dose of losec.

this is day 3 on the gaviscon and it has increased his straining. He acts like he is constipated with diarrhoea IYKNIM? he seems to have mucous coming out of both ends with the vomits and poos.

He has been having a good sleep in the morning now and another good one after lunch but when he wakes from that nap after lunch it is horror till 1am. Do you guys think that is just normal for reflux and we should just learnt to deal with it?

reAllytee

20-02-2009, 17:29

he poos everytime he wakes up, with feeds and after feeds he moans groans and strains all the time especially while he is feeding. Most of his poos are a green mucousy, but some are 'plasticy green too' his bottom is so sore becuase he has had terrible bowels for about 4 weeks now. the doctor thinks it was becuase he was on a too higher dose of losec.

this is day 3 on the gaviscon and it has increased his straining. He acts like he is constipated with diarrhoea IYKNIM? he seems to have mucous coming out of both ends with the vomits and poos.

He has been having a good sleep in the morning now and another good one after lunch but when he wakes from that nap after lunch it is horror till 1am. Do you guys think that is just normal for reflux and we should just learnt to deal with it?

Sounds like bubs is having intolerance/ allergy issues ... I would be speaking with the Paed about an elimination diet so that you can see how things go.

Things shouldnt be like that as it does somewhat sound like he has a blockage so is constipated & then is having the overflow diahrroea but it could just be from her 'reactions' iykwim.

I would start taking out the known culprits for issues being dairy, soy, wheat, eggs & nuts but then also things like chocolate, caffiene, citrus ...

Check out the RISA website as they have some great ideas but also advice & support groups that may be near you !

You sorta do need to learn to deal with it but you also need to stand strong when you know bubs needs help iykwim.

It took me 6mths to get someone to listen & really help G & it made a huge difference ... Things werent perfect but he settled dramatically.

madboysnmummy

20-02-2009, 20:02

i forgot to say he has been on elecare for 7 weeks. I havent been bf him since he was 3 weeks, i was so sick with mastitis and couldnt keep up :( unless he is allergic the the corn ingredient. I will be talking to the paed on tues again.

reAllytee

20-02-2009, 23:04

Could be ...

My little guy doesnt tolerate Elecare ... Goes great guns at first put on stacks of weight & then all of a sudden started dropping weight again.

But I would be speaking with your Paed & pushing for him to look into things more.

Good luck & hopefully you have a better weekend :hugs:

madboysnmummy

20-02-2009, 23:12

thanks reallytee you have a good w/end too!

chookie_03

22-02-2009, 19:59

hi all.. well i think its about time i join in here if thats ok..

even thoughmost of you have bigger problems than me, i feel like i really need to talk to others that know what is going on..

well i have an 11 week old son, and since birth he has had silent acid reflux, although we have only recently figured out that was the problem. he does really big gulps, swallows big amounts all the time, feels like he is constantly screaming, the second i put him down he cries until i pick him up again. and wakes every 5 to 30 minutes every night..

he has now been put on losec, but when he did a poo today it had a little bit of black gooey stuff in it, like when they do their first poo when they are born..

I dont know how to help him anymore, and its really making me sad.. :(

madboysnmummy

22-02-2009, 23:22

:hugs:chookie Im sorry things are tough still it just doesnt seem fair does it especially when you read about or see mums with 'normal' babies or ones that just sleep all the time peacefully on their backs for hours at a time.

What day are you at with the losec? hopfully you will get results soon. As for the poo is it a dark green? If it is black thats not so good. see how the next few are and if it stays black like meuconium I would be getting in touch with the doctor.

When owen started his special formula he had a grose dark green/blacky clean out. It seems different from one week to the next I forget what normal baby poo lookes like :laughing:

I hope tomorrow is a better day and you get plenty of much needed rest :hugs:

I find it better to talk to as many people as I can and talk about my feelings.

I actually am seeing a pshycologist to help me deal with my bonding issues as well because after 10wks of screaming baby I have trouble connecting. Medicare provides up to 10 visits with a psych of your choice just in case you need to chat with someone about your feelings and emotions. I have found it a huge help for my sh and myself. My dh is affected by the lack of sleeping and crying too :(

For all the other reflux mums have you found water to be a help of a relief??

I have had suggestions to try it when bub is crying and give it in between feeds I just thought I would see what everyone else think of giving water.?

Also mum was looking after ds3 today and he was crying and hungry and due for a feed after one 4 hours proir. He did a big spew and she said he doesnt need feeding he is still bringing up the last one. Does anyone else get comments like this? Or is she right???? maybe he doesnt need feeding. It just seems like he vomits no matter what ever after a 9-10hr fast over night.

ok enough :ecomcity: i talk too much can you tell!!

reAllytee

23-02-2009, 01:16

I suggest you start making a diary of all of this because it will help when you next see the Paed but also with the GI.

You often get caught up & either forget something etc so its easier if things are written down even for yourself iykwim.

Now he does not need any extra water :no:

Under 10mths of age babies do not need anything extra, their formula or breastmilk gives them all they need hydration wise which is also why trying to demand feed even when bottlefeeding is a good idea because they know when they are thirsty or hungry iykwim.

As for your mums comments please dont listen to this :no:

More than likely part of the reason bubs is refluxing is if his tummy isnt digesting his feed quick enough or the likes ( trying to explain it basically ) it will just bring whatever back up whenever it wants iykwim.

For us we needed the help with the pro-kinetic to get his tummy to drain otherwise it just wasnt doing it on its own & this helped dramatically with his feeding. Things werent perfect but it was lovely being able to feed him without covering everything in towels, myself included !

As for the black poo its hard to say but if its continuing you are best to seek help because of what it could mean. More than likely it is just the Losec doing its job but its best to get it checked to be sure.

chookie_03

23-02-2009, 09:45

morning all..

oh my gosh, im back to going crazy.. :laughing::laughing:

this was my day yesterday and last night and into this morning..

yesterday
10am - bath, then slept till 2 pm.

woke, had a nappy change and a bottle. then screamed on and off till 6.30pm, had a bottle, then continued to scream till 8pm.

i put him in the cot at 8pm, which he was VERY unsettled till 9.15 when he finally dropped off..

woke this morning at 2.25 am had a bottle, nappy change and back to bed at 2.50am, didnt sleep till 3.25am

woke up at 4.30am screaming, and very unsettled, didnt go back to sleep till 7.30am, but i had tried a bottle at 6, and he didnt want it..

then he woke at 9.15am and has had a bottle and nappy change..

i really dont know how to help him..:(

babyDom

23-02-2009, 12:56

Hi Everyone,

I'm new to this forum. I too have a baby with reflux (Silent). Bub is 10 weeks old, I suspected silent reflux from when he was about 4-5 weeks old, Paed. has confirmed it. He is currenlty on 10mg losec am/pm. But what I want to know is, Is it normal or common for babies with silent reflux to reflux for over an hour on and of,f about an hour and a half or so after feeds? Bub gets woken up constantly on and off from refluxing, he doesn't get much sleep. He wants to sleep, can sleep and settle on his own without my help. The only thing is once he refluxes for so long he starts to cry and becomes unsettled. This happens after every feed. I don't think he is in any pain, just annoyed and frustrated, and tired.

ejs

23-02-2009, 17:05

Hi everyone. I am new to reflux and man what a pain it is! DD was only put on meds a couple weeks ago. Tried the Zantac and didn't work, on week 2 of the Losec and saw some results after a few days and now she is teething and pretty much refusing all feeds again. So hope this doesn't continue! From what I have read pretty much all of you have it worse than me, my bubs sleeps well but her problem is refusing her feeds and crying while she is feeding, which has been stressful due to her weight gains. And so sad to see her not want to eat because it hurts. But we just keep soldiering on don't we???

madboysnmummy

23-02-2009, 21:10

chookie - I feel for you, it is tough, but just one day at a time and hopefully the losec will start to work soon.

babydom and ejs - thanks for keeping me company on this horrible rollercoaster of up and lots of downs called reflux. I get so frustrated with it specially with todays medicine it is all still such a try and guess game please come on here anytime you are finding it tough or just want to vent. If it wasnt for bub hub I think I would have completely lost it along time ago

babydom i dont know alot about the silent type of reflux maybe one of the other girls might be able to step in? All I know is my boy pukes all day and all night even on the losec and gaviscon sachets and still acts like it burns.

ejs - refusual of feeds is tough my bubs both refused mt breast initially and I was so upset he has only refused a few times in the past few weeks, but does cry through a whole bottle most times. he acts desperately hungry and gulps alot. I hope you see a difference soon

i sometimes wander if the bubs ever get the relief in the end. ds1 is now 28mths old and i forgot alot of when he was a baby I just rememberr it was horrific, he cried alot and spewed alot till he walked. I dont ever remember when it got easy. I just keep thinking hurry up and grow up!! ;)

I hope all you lovely ladies had a great weekend

oh and mikenzees mum how is miki doing with her infection?? I hope she is improving since your last post x x x

babyDom

24-02-2009, 12:16

Hi Chookie,

Your Bub is still probably in pain, did you say you only recently put him on losec? His oesophagus is probably still inflamed, especially if he has had silent reflux for a while without any medical intervention. You could try giving him mylanta before you put him down to sleep, so when he refluxes during sleep it won't hurt as much, there he might not wake up crying in pain. If you give mylanta and he settles down, this can prove that his oesophagus is still inflammed, or that his reflux is still acidic, it can take a while for the losec to kick in. So in the mean time mylant can give some relief untill Losec does what its suppose to do. My Paediatrician told me to do this, as we had many trial and error with my son's losec dosage.

My ds will be 11 weeks at the end of this wk, he's had silent reflux since 3 wks of age, he was exactly the same as your he screamed and cried all the time, always wanted to be nursed in an upright position, and when I put him down in his cot he would wake within minutes crying. We didn't know what was wrong with him untill I researched reflux because he would spew every now and then, not often or not much at all. And that's when I learnt about Silent Reflux, he had about 80-90% of the symptoms listed on RISA's website. THen the battle begun with GP, community nurses, and Paediatrician, where they did not take me seriously. They all said Stop being so anxious, its my first bub bla bla bla.... My GP wanted to send me to Tresillian sleep and settling centre. But I protested because i beleived ds was in pain and there was soemthing wrong, and it was not settling issue.

Anyway, enough about me. If the reflux is not under control, if he is still in pain then you will have a hard time settling him. Do you know when he refluxes? My ds will reflux about 1 1/2-2 hrs after his feed, and this is when he wakes up starts of with strirring, gulping, swollowing and eventually crying. He will then reflux on and off for the next hour or so, sometimes for 3 hrs!!! Anyway if you have any questions feel free to ask. I have had a (private) mother craft nurse come out to see me at home to help me with reflux management, sleep and settling etc. which was great.

I wish you all the best, I really feel for you and your family, and trully understand what you are going through!

babyDom

24-02-2009, 12:44

madboysnmummy- thanks for the support. I know what you mean by thinking 'hurry up and grow up!' I keep telling myself...'This too will pass!!!' We have our good days and bad days. I find having a big cry and let it all out every now and then helps.

Do you feel alone? I feel that it is so hard with family and friends, I feel like I'm constantly having to explain or educate re:infant reflux. Sometimes I feel that they don't believe ds has reflux because when they see bub, bub is all smiles and everyone is nursing him. They don't see what he is like when he's refluxing, unsettled or when I'm trying to put him down to bed.

Reflux is so depressing, I still feel sad every now and then for giving up breast feeding when he ds was 6 wks, because he was fussing on the breast. It was a very stressfull overwhelming period.

You'd think today if Drs can perform complicated operations and surgerys or if men can travel in space, someone would come up with a cure for infant reflux, as it is so common in infants.

I'm seeing the paed. in next wk, to review ds, I have so many questions that needs answering.

Good to hear you are seeking help for yourself. All the best

bebealice

24-02-2009, 22:26

I have been totally brought to my knees with fifth baby with moderately severe reflux since age of three weeks. It took me a while to work it out but now at 11 weeks no closer to effective treatment. Spent a lot of this time thinking that sleep problems were something I was doing wrong like too much coffee or not settling him properly etc until clinic nurse told me was classic of reflux. Takes half hour to get him to sleep then sleeps for 15 - 30 mins then wakes. Takes me another 30 -45 min to resettle but only sleeps for 5 -15min jags and by time we have fought it out for 2hours is time for a feed again then starts vomiting. Have been on Zoton 15mg twice daily for about 4 weeks and thought my prayers were answered last week when started on Motilium four times daily. Two days later fed, stayed awake for an hour happy then slept for 2 -3 hrs. Unfortunately only lasted for 24/24. Not sure if had gastro then which still recovering or whether reflux just worsening. Have found it not uncommon when start on new medication that get this instant great effect then wears off quickly. Feel like constantly walking up to him with a syringe of medication also give him Mylanta and Gaviscon. Fortunately now sleeping for five hour break over night or would not cope. Getting very down about baby who does not stop crying even when being held can't settle him. Am going to give it until the end of week to see if was gastro maybe given Motilium longer chance but otherwise back to paeds. Think tho she may not have much experience with it as asked if i was swaddling him to try to get him to sleep longer rather than realising that he is constantly refluxing and often milk coming out of nose at these times - imagine pretty hard to sleep when this happening.

madboysnmummy

25-02-2009, 00:13

I havent got much to write today because I have had the day from hell, I just wanted to say reading what you guys are writing makes me feel less alone and like its not just happening to me and im not imagining the severity of all this. I just dont want him to be in pain anymore.

hi bebealice thanks for sharing your story. Looks like there are a few of us now around the 3 month mark. I am holding out and looking forward to my appoint with the g/ent I am hoping and praying he can help us.

like bebealoce said if it wasnt for the 4-5 hours at night I think I woulnt cope as well as I do. I am certainly doing alot of crying though it is tough!

does anyone know how long it takes for the oesophagus to heal? My bub screams and almost convulses when the bottle finishes and is very unsettled and uncomfortable before and after feeds still. I wander if he is still ulcerated ? can they only tell by looking under a G/A

Man im buggered! chat soon!

Nowhere

25-02-2009, 00:53

hey guys sory to here all your little ones are suffering with reflux is a nasty mean disease unfortunately

madboys mummy it can take weeks to monthe depending on how bad it was inflamed did they do a scope to see the inflamation, what dose of meds is he on etc

babydom I agree why cant they find a cure that works, i know for miki nothing worked not evedn the anti reflux surgery nothing at all

madboysnmummy

25-02-2009, 09:11

hi amy,

ive been thinking of you - hows mikis infection going did she need the a/b's?

As for my owen no one has done anything, but put him on losec, elecare, gaviscon and rhubard and soda mix.

I was on 10mg losec am and pm, but he had shoking mucousy diarr so the paedi cut it back to just 10 in the morning

he screams non stop from about 7 til 12 and wont let me comfort him and cries after every bottle.

I hope everyone is blessed with a nice day !

Nowhere

25-02-2009, 09:49

oh whats rhubarb soda mix is that the new reflux fad or something ????

Losec how long has he been on the losec has anyone told you that it wil take at LEAST 2 weeks to start working as in to stop the acid procuction but what most people seem to forget is that if there is already burning in the oesophagus it wil take longer then 2 weeks for that to heal and stop burning KWIM think like if you cut your lip and it hurts until the cuts healed not cause you are getting acid on it but anything you get on it be it saliva or anything KWIM, The losec works as a proton pump inhibitor so it reduces the acid production, but the stomach secretions ieven on losec wil still sit at around a ph of 4 so its not exactly nutral KWIM, So until the burn is healed he wil stil scream in pain if anything touches his oesophaugs, Does that make sense, with miki is was a matter of months but she unfortunately was one that stil didnt get better with losec improve yer but not enough, oh and the ten in a morning nothing at night I would be asking the dr as to WHY, most would split the dose to 5 and 5 if the required dose is 10 a day the reason being even though losec has a 24 hour life span in the body a baby has a faster metabolism and there for doesnt last as long

the same goes with elecare it may take a while to start to motice a diferce as the bowels need to heal first KWIM

Have you tried Mylanta or gastrogell, at the times he is unconsolable, If not perhaps ask the Drs about it as its a ant acid it wil actualy nutralise the acid then and there, I know only for a short time but sometimes its enought to coat the esophagus and give you that 15 to 20 minute window of pain free time KWIM that may help you setle him

Im really interested to here about this Mix, Rhubard is a prety complex food do digest and soda well that gives any one gas KWIM

MMMMMMM as for miki she is ok now after a hard weekend her feed line to her bowel snaped saturday night so she had to go back in to hospital they thought they couldnt fix ist and she would need surgery but thankfuly was fixed in on sunday morning so just needed a night of IV fluids which is no biggy for mikenzee, but unfortunately due to her being canulated so many times she has little vein acces so they had blew 3 veins and the 4th one stays in the rest of the night, Unfortunately when we was on the way home from the hospital miki had another bad turn, when we got her out of the car at home she was unconcious and her sugars was at 1.1 so we had to get the ambos out to take her back to hospital, It all however turned out fine in the end

As for the infection its not to bad just very burnt around the stoma thats all we are trying to find a way to stop it leaking and burning

chookie_03

25-02-2009, 10:37

well just when i thought bailey was going good..

his nights have gone back to really bad, and now he wont finish a bottle and screams while drinking and after..

tim wants me to ring the paed and get in earlier but i just dont no.. :(

madboysnmummy

25-02-2009, 12:56

cant hurt to ring and leave a message for him to call you, sound like hes in pain chookie it must hurt him to drink

amy - hes been on losec since he was 3 weeks old we new when we left the hospital he was a reflux baby but they told us to wait and see so we waited till 3 weeks. It sounds like you have had some dramas with miki. I hope she is feeling better today. would you think I would get better results in your experience with miki if I go to 5mg am and pm instead of 10 in the morning?

moftwo

25-02-2009, 13:07

wow:p so much has happened here since i posted on the very first page. I should be more regular with checking in.

I have read all the posts and i feel so very much with all my heart for you all, especially the newbies to reflux! my DS is a silent acid refluxer and it has been hell on 2 feet:hair: but now he is 21 months old, we are finally seeing a light at the end of the tunnel.
I have also tried all the other meds with not much success, but let me say that Zoton, not Zantac, has been our saviour. It is only prescribed for children over 12 months, but if any of you are not having any luck with Losec or it seems to be less effective, speak to someone about Zoton. If it wasnt for this drug, i think i would be in a looney bin. DS can now even handle small amounts of dairy which use to cause huge amounts of pain and issues.

I had no idea medicare cover pysch visits. wish i had of known something like that sooner. because it took docs over 7 months to diagnose or even agree that there was something wrong, i lived in a haze and even now, i recall very little about DS as a baby other than himi screaming all the time. My doc prescribed anti depressants because it got to the stage i could have walked away from my kids at any given time and been happy to see the back of them. Not good. And like many others, DH and family found it hard to grasp and understand. MIL was especially bad which made DH worse, but i just kept going with my gut and it worked for us in the end.

Also, someone mentioned gastro gel - AMAZING too. much better than mylanta or gavison and cheaper. It is a quick, instant reliever, but it doesnt last a huge amount of time. But nrmally just long enough to settle everyone down. Just remeber not to give within at least an hour before or after Losec or similar as it stops those meds working. I gave 3mls whenever i felt DS needed it.

So nice to have someone to chat to. It is soooo much better now and i remember well the days of endless hours of research on the net to try and understand this damn thing better, wishing i had someone to talk to about it all who would know what i was saying and empathise.

Well done all you mums with refluxers!!:yelclap: its a hard job and we have survived!!!

madboysnmummy

25-02-2009, 13:28

yep hours and hours of surving the net and still left clueless! its amazing how little info is out there. I have never heard of gastro gel.

oh and rhubarb and soda is pretty much as it sounds the womens and childrens told us to use it for his colic and reflux. I actually think the rhubarb makes him more acidic and refluxy. I nearly threw the bottle against the wall with all the other useless rememdies.

let me just say

mylanta - no difference
marinas mix - no no no
infacol - hmmmm big nup
gripe water - big big gripe alright nope again
infants friend - good for 3 days at a time
rhubarb and soda - currently being cursed and binned
inner health - useless

wonder if there is anything else to try hmmmm.......

chookie_03

25-02-2009, 14:21

i cant do this anymore.. I want to ring the pediatrician, but i know i will just break down and cry.

i have nothing else i can do to help bailey..:crying:

beachmummy

25-02-2009, 15:02

Aww chookie :hugs::hugs: Stay strong hun, we all know how you feel and are here for you. Ruby has been screaming for the last 3 hours and is finally asleep in her sling. i think i cried for the past two hours too:( There is just nothing worse than seeing your child in pain and not being able to help them. Ring the pediatrician hun- it doesn't matter if you cry.

madboysnmummy

25-02-2009, 15:11

i cant do this anymore.. I want to ring the pediatrician, but i know i will just break down and cry.

i have nothing else i can do to help bailey..:crying:

yep :yes: go ahead and cry then at least they start to do something. a couple a weeks ago wheb owen was his age I went to the womens and childrens and did just that!

I think the crying is so much worse when they are having a growth spurt too.

owen is having a bad day today too. im not sure why yet......

I had a dream last night people were coming up to me from everywhere say oooowww your babys smells!!! now im paranoid cos he does :laughing:

Nowhere

25-02-2009, 17:15

mylanta - no difference
marinas mix - no no no
infacol - hmmmm big nup
gripe water - big big gripe alright nope again
infants friend - good for 3 days at a time
rhubarb and soda - currently being cursed and binned
inner health - useless

wonder if there is anything else to try hmmmm.......

Yerp they are all useless mylanta can sometimes help as it nbutralises the acid but if there is also bowel pain it wont do a thing, the otehr stuff is all just over the counter stupid remidies for crying babies that are crying for NO reason they are not for reflux are they really KWIM

Have you tried gastrogel I found that better then mylanta as its thicker and coates the throat and that better but again wil only work on the acid pain

As for spliting the dose from my expereince a two times a day dose is generaly better but you would be best to speak to the dr

IS there anything else, medication wise not really there is zantac, and zoton, and maxalon and ondanzatron but thats it really, What is it that hurts him the most the refluxing as in the burning or the tummy pain

ejs

25-02-2009, 21:42

Hi everyone, Having a bad week with DD. She has had a bit of a cold for the last 4 - 5 days and totally refusing feeds and I think it's making the reflux worse. Is that normal? she just cries and arches her back and screams when feeding and cries and sucks her thumb cause she is hungry. She went to daycare today and didn't drink a bottle from 10am-5pm totally refused them. I am so over it. Can't get into a paed until 3 weeks time and have been on Losec for 10 days, when do you start to see a result? She seemed to be good after a few days on Losec but really bad again. Going to doc tomorrow.

madboysnmummy

25-02-2009, 22:07

I am so over it. Can't get into a paed until 3 weeks time and have been on Losec for 10 days, when do you start to see a result? She seemed to be good after a few days on Losec but really bad again. Going to doc tomorrow.

im sorry ejs it is a never ending battle. I have had ds on losec for 10 weeks and the only difference I see is that we get a 4-5 hour sleep from 12ish to 5ish

Good luck at the doctor tomorrow

You know what sux half the doctors dont even know what they are doing.

I was going back thinking tonight about my first reflux bub who is now 28 months and I was thinking what fixed him and then I got sad because the reality of it was we went through 18 months of hell with him. because he had all the side efeects of ear problems, adenoids had to be removed and tonsils out at 14mths I was told this is common with reflux babies. He still belches alots, gets the hiccups and gets little mouth fulls.

hope everyone gets some much earnt rest tonight :sleeping:

chookie_03

26-02-2009, 14:56

just wondering if anyone can please tell me how to make up the infant gaviscon.. i have read the instructions, but i really dont get it.. :laughing:

I must be a bit silly i think..

bebealice

26-02-2009, 22:36

Hi chookie - are you breast or bottle feeding - if bottle mix into it if breast then mix up into a paste then dilute to 15mls per packet - i found the latter a bit of a pain as I am struggling to continue breast feeding - I would make it up to as little amount as possible but most times he just vomits or possets it back up.
Have had a better couple of days but feeling really sad and defeated - paeds suggested lactose free formulae as has always had problems with bowels ie wind, greenish poos, straining but have previously managed feeding off one side only. Really think has has a mild dose of gastro and in general in last three weeks exacerbation of all symptoms - after 24 hours is much more settled on formulae but still refusing to sleep and often because he is refluxing with milk coming out of nose. Feel sad if I can't continue to feed but also deflated as phone call to paed was that "there is nothing else we can do - you are on maximal treatment" . Am sure they think we make this up how bad it is with the endless screaming and not being able to settle your baby and constantly having to carry him around. Don't think baby having too much fun either as he just lies there as is so exhausted from lack of sleep. He manages about 20 - 40 min in a four hour cycle. It is really hard on the rest of the family and relationships but think really the only thing that will get us all through is if can pull together with partners and get some time away for some silence!

madboysnmummy

28-02-2009, 14:33

ok guys hows eveyone going?

I am having huge success with gastrogel, but thought I better see if anyone knows if I need to stop using the gaviscon infant as well. He has them in each bottle and I am giving 10mls of gastrogel in the evenings or arvo if hes bad. - I hope thats right! And it freaked me out but the first time I did it he went all floppy intead of being tense. I have never felt him so relaxed ever! thanks amy for the suggestion x x x

missmilliesmum

01-03-2009, 12:59

Hi all :wave:

Well I have been reading all of your posts over the last few days as I've had time and now it's my turn to share my story...

I just want to say that I have felt such comfort in reading your stories as I often feel totally alone and isolated in regards to my DD;s reflux and feeding issues and this thread will be a great place to share all these feelings and bounce ideas off eachother!

My name is Sarah and my DD Amelia (Millie) is 6 months old.

I was induced at 37 weeks due to pre-eclampsia and Millie was born without a suckling reflex.

This made BF very difficult, but I persisted until she was 10 weeks of age seeing many health professionals Lc's etc until she eventually totally refused the breast.

Millie had mild reflux from birth and was a very spewy baby, having large vomits during/after and between feeds, but was generally happy and content.

I happily FF her for until she was 4 Months Old with little problems other than the massive non - stop spews which I could live with.

Then at 4 1/2 Months everything changed. Millie started screaming during feeds and then refusing feeds in my arms. We then fed her on a pillow on our laps, but she started to refuse this too. She would then only feed flat on her back in her cot and even this was a struggle.

Now she will barely feed at all. She will feed flat on her back in her cot. A 200ml bottle will take approx and hour or so of stop starting to get in to her and it is an absolute battle with screaming and refusal all the way.

So consequently I am housebound with a baby that will only feed in her cot and will only do that at the absolute best of times. I struggle to get even 400 - 600 mls into her daily and I feel I spend my whole day feeding her.

Our GP started her on Losec 10mg daily 1 month ago with no effects.

We were then referred on to the Paed. He was at least concerned. He ordered a Barium Swallow which Amelia had 2 weeks ago -This showed Severe Reflux, but no so severe that it required surgery and could be medically managed.

The Paed then increased her Losec to 10mg Twice Daily - we are yet to see any improvement. I have just today started adding Infant Gaviscon to her bottles in the hope that this may also help - We have tried AR formula's also, but she refuses to drink them and has to work too hard to get anything.

Also saw a Speech Path who specialises in feeding issues who said she could not help us until the medical side of things was more under control - which in her opinion it was not.

So I am back to square one and ringing the Paed on Monday to get some HELP! The next step is Neocate as I had a Milk Protein and Soy intolerance as a Bub and this is quite often hereditary.

Also we started solids at 5 months and are now having them 3 times a day. Millie was very much into them to start with, but this has declined in the last week and she is not really into them at all anymore.

Whilst I am very unlucky that Millie will not drink and is in pain and upset at feed times - I am very lucky that she sleeps well and is generally happy the rest of the time.

Like most of you I have Mother's Guilt big time. Somedays I just want to runaway and then I feel incredibly guilty for feeling that way. I love my baby girl and I just want her to be happy and healthy.

I cry every single day and have quite severe anxiety which I have never experienced before and it worries me endlessly. I felt like I was coping so well with Motherhood until Reflux reared it's ugly head.

Like all of you - I feel that people in my life simply do not understand how hard/severe a reflux baby is. People make me feel like I am exagerating her condition and I should just 'get on with it' My MIL is especially bad. Incidently noone in my life has had a refluxer - so no surprises that they just don't get it.

I really look forward to chatting with all of you and helping eachother through this tough journey. I feel better now for even just writing all of this down and getting it out there!

Sorry for that Marathon post and thanks for taking the time to read it!

:hugs: to all of you for doing such a fanstastic job!

madboysnmummy

01-03-2009, 13:19

thanks for your story missmilliesmum, i really truley do feel for you and it is so tough it being your first bub too cos you begin to secon guess your instinct and feel like your making wrong choices and doing a bad job - at least I do anyway. I am glad you have joined us!

I am having good nights now but the day times are still a real battle especially the last 2 days. everytime I get him to sleep he refluxes and wakes up. its not nearly 1 and he has been awake since 6 and still trying to get to sleep. I cant believe how im suppose to get this right when i have a 1yr old and a 2 year old as well.

I am so glad he sleeps at night now cos im just not coping.

every wondered why you get a couple of good days thrown in then a week or so of bad days or nights? I wander what is different for those couple of days.

weird.....

anyway of to try more things to help settle the unhappy chappy!

How is everyone?

kiwibird27

02-03-2009, 09:59

Hi, My daughter had severe life threatening reflux as a baby until she had a fundo operation to stop it at 1 1/2 years.. she was critically ill and is still on lots of meds but since the operation is doing really well... The lady talking about GASTROGEL.. 10 mls is ALOT, it contains aluminium and u should only use it after talking to a paed.... I used to give DD 1.2mls of gastrogel as required when she was 6 months old.. until we started a new medication that could not be given together with it. It's really important to talk to a paed or if really serious a gastroenterologist to ensure the reflux is managed instead of just covered over. Hope I don't sound bossy but I know what your all going through.. U just wanna do the best and make the pain go away and not many doctors are very helpful when it comes to good management.. My DD was feed into her bowel for 1 1/2 years cause her stomach wouldn't tolerate any milk.. even then she would vomit 30 times a day.. just pure stomach acid.. It was so hard and such a hard journey but now with good management she is pretty good!!!

Nowhere

02-03-2009, 10:02

madboysnmummy

02-03-2009, 10:12

Sweetcat

02-03-2009, 12:22

Hi guys,

Thanks for sharing missmilliesmum. Your story sounds all too familiar. I think the worst part of it that we have all experienced is the lack of understanding from family and friends and just general know-it-alls who seem to think that reflux doesn't exist and it's just us being too sensitive, paranoid etc. I am just so sick of hearing people saying "oh it's normal, most babies are happy to spew a little". These attitudes certainly don't help and are detrimental to the mothers mental well-being Ias it was in my case I ended up with PND).

I know all of you have had a really tough time and are still having a topugh time but I wanted to share something positive.....my little Frankie seems to be doing really well. Since the paed increased her dose of losec we are getting nearly no feed refusal and excellent sleeping day and night. Believe me it was not always this easy. She would refuse all feeds, would scream non stop and could not be put down at all (in 24 hours)! I'm so proud of my little girl for soldiering on and doing her best and I am also so happy that the losec is working well for now and she can finally smile and enjoy being a baby. Incidentally we have an excellent paed in Sydney who is very knowledgeable about reflux and his understanding certainly helps.

Madboysmummy - hang in there, counting down the days till your appointment is always good. I do that too. How long has your little one been on losec?

kiwibird - sounds like you have been to hell and back. Glad to hear your little one is doing so well after the operation.

Hang in there everyone :hugs:

kiwibird27

02-03-2009, 15:51

thanks guys re the gastrogel

i was going off the bottle and gave 10 mls at night, but only did it twice till I knew I though it was a bit too much as well. so the last dose I gave 5mls

Either way it only really worked a few times.

im just back to losec and gaviscon and elecare

I am so sick of reflux! 9 days till I see the g/enterologist

also hi kiwibird ! thanks for your story definately not butting in !

Cool.. the bottle is the adult dose!!!! We had huge sucess with Zantac and Losec combined... and DD is on Elecare too.. Her is her story if your intereted.. Mikis mum is also a reflux EXPERT!!!!

http://www.cdgs.com/_storymeg.html

missmilliesmum

02-03-2009, 16:58

Thanks for your support all.

Sweetcat - Glad to hear you are having some improvement with your Frankie (LOVE the name also!) How much Losec is she on? We are currently having 10mg Twice a day and wonder if it needs to be increased? Also - What formula are you using? Or are you still BF?

kiwibird27 - Wow, you and your DD have had a tough journey. Thanks so much for sharing. I am glad things are improving for both of you.

madboysandmummy - Hope you see some improvement soon. We are using Losec and Gaviscon at the moment with no luck also.

I have a question for everyone...???

What formula's are you using? I have an appointment with our Paed on Wed and I am hoping to insist on trialing either Neocate or Elecare?

Can anyone tell me the benefits and changes you have seen when switching to these formula's? I was on nutramagen as a bub, but I don't think they use that much anymore?

Thanks again...

Sweetcat

02-03-2009, 17:08

Hi all,
Missmilliesmum - Frankie is on 20mg losec twice a day which our paed says is quite a high dose but we tried her on as low as 5mg total a day and each time we crept the dose up it's done nothing until now. I think part of the trouble with reflux is the trial and error of finding the right dose for the bub and then chasing it as the weight increases. I am still BF as Frankie won't take a bottle at all. I'm still happy to do this but I have had to change my diet dramatically to help with her reflux, ie no dairy, nothing acidic like tomatoe or citrus etc etc. It's worth it though as she is a happy little vegemite now. I'm hoping your paed appt goes well and hoping that you find the right formula too.:fingerscrossed:

reAllytee

03-03-2009, 00:46

Cool.. the bottle is the adult dose!!!! We had huge sucess with Zantac and Losec combined... and DD is on Elecare too.. Her is her story if your intereted.. Mikis mum is also a reflux EXPERT!!!!

Fancy seeing you here :p

We are the same ... Great success with the Losec & Zantac tag teamed but as kiwibird said you really need to be giving meds with the help of a Paed or GI otherwise you could cause damage !

Nothing 'new' here but G is now finally only waking a few times a nite & then not for long which is just awesome & means we are getting somewhere !

GI appt next week which I cant wait for as I have loads to harass him about !!!

My heart goes out to you all because I know how hard this struggle is especially when trying to get something to work & to get it all under control :hugs::hugs:

2sweetgirls

03-03-2009, 01:02

oh the memories of a reflux bub....:no: not nice ones at all.

I am too sleepy to read through the thread but just wanted to give some of these:hugs:

Its tough work!

madboysnmummy

03-03-2009, 15:44

hey guys thanks for the info about the gastrogel.

naughty desperate me LOL - I gave it twice and felt like it was too much so the same day I posted my question I went to the GP. He said just go along with losec and gav till I see the g/ent but a ml at night wouldnt hurt. Im a bad mummy! he ok though...

he has been on Losec since he was 3 weeks.

I am seeing stacks on purple balls of the losec coming up over the day with his vomits.

so im wondering if he is crying more cos his dose isnt accurate due to the vomiting of the spheres. he brings up a dozen or more. they stain too! for about 5 days now he has been very whingy during the day and constantly refluxing while he is asleep. He has gone back to 2 half hour naps during the day and quite un settled at night.

Hurry up appointment!!!

hi everyone one else.

It was so nice to hear a positive story from one of you too and thanks for the story link too I cant imamgine what it would have been like for you guys having all the time in hospital etc. HUGS to all of you xoxox

madboysnmummy

03-03-2009, 15:47

missmillies mum - I noticed a huge difference with the elecare, but it did take a while for the bowels to heal and settle down. He is 14 weeks and been on it since he was 6 weeks and his bowels are slowley improving in the last week. YAY!! no more runny mucousy poos - for now anyway..... I would ask for sure

I get 8 tins for $32 on an authority prescription otherwise its too expensice 50 bucks a tin that lasts 3-4 days. (you will get lots of empty oneS!)

gizmoduckus

03-03-2009, 16:48

Hi everyone! I hope you don't mind if I join you here.

My DS2 is 5 weeks old and he has been diagnosed with reflux. He is currently taking Losec 10mg twice a day and we just started him on Neocate yesterday.

The problem that I am having trouble dealing with is that people don't understand how hard it is to have a child with reflux.

My SIL has a DD who is 5 days older and because she gets up for a feed every 3 hours everyone thinks that we are both doing it just as hard. They don't get the fact that at least her DD is sleeping between feeds. Most nights I can't get DS to sleep until 1:30 am unless we are holding him or he is in his bouncer and then he is up by 5:30am.

My mum isn't any better. She thinks that we are getting him used to being held and that is why he wakes up everytime we put him in his bassinette. It really isn't a choice for us to just put him down. I wish we could!

The thing is that they don't see how bad he gets because everytime they see him they want to hold him all the time which is why he is so content.

How does everyone else cope with pretty much doing it all on your own because every thinks that it isn't that bad?

madboysnmummy

03-03-2009, 22:11

gismoduckus

Cope!! I dont! LOL

i feel for you and wish i could say things could be different

I get the whole no one gets it. My baby pukes non stop all day long and all night even in his sleep. My arms are so sore from holding him all the time and becuase he is a big baby like all my others it is hard to get people to believe me there is something wrong.

it is the most frustrating disease ever. I dont actually feel any doctor has really helped him yet. I had good results with ds1 and his reflux on just losec.

I am so lost with this one though and I am sure something is being missed

no joke I have 4 bibs on him all the time just to save clothes and he pukes every 5-10 mins.

I hope the g/ent can help me find a way of ruducing the burning and vomiting cos to be honest i think most of his medication is coming up with the vomit.

pfewwww got that all out what a ramble!

adinic

04-03-2009, 00:47

Havent been on here for a week or so, I had a few pages to catch up with. I want to thank everyone for sharing their stories, it somehow makes you feel human and normal that someone else is going through it too and your not just seeing things/ hearing things and your not alone when you tell GP ect that your son/daughter is ALWAYS crying - there has to be something wrong and its not in my head!!!!

Its amazing how we all kind of have the same sort of story, with the doctors not listening, family not understanding, trying lots of different meds and sometimes seeing little results. And we all have babies that CRY, CRY, CRY and CRY and somehow we deal with it.

My son is doing better these days, he does not cry as much BUT he does get himself worked up pretty quickly and can get unsettled (I think he will always be like this because of his reflux). I remembered the first few weeks when he started to get better and not cry as much, he was about 4 months old and I was so nervous that he would go back to the way he was with the pain and ALWAYS crying. I just took eachday at a time, and I still do, I dont get too excited about his reflux improving because I really dont know if it will change back to the way it used to be. I have to say that since he started taking neocate, zoton and gaviscon AND seeing chiropractor I saw a huge massive improvement. Now at almost 6 months, he tries to sit up more, doesnt really like being on his tummy and will at times not eat all his feed all at once. He will still throw up, somedays it is pretty bad and then others there is nothing but a bib is always on him. Something that really helped my son was routine, even when he was very stressed and unsettled - I just kept doing the same thing EVERYDAY - his sleep, feed, playtime etc and it did take a while for it to all work but I got there.

I ask myself how has my son's reflux made me feel deep inside, how has it changed me and I feel that I truly could not have anymore babies. We did think we may have a 3rd after our son (while I was pregnant) but after having a baby with reflux it has turned me off. Just the thought of a slight chance of another baby having reflux is something I know I could not handle again. The first 4 months of my son's life I did not enjoy him at all and was not connected to him, and I just cant do that again, I can not go back there again! On a positive note, this has made me a stronger person and I now know that when it came to the crunch I just kept going. I am alot stronger caming out of this journey with my son's reflux then I was at the start of it. There is a light at the end of the tunnell.................I just kept thinking that. :goodvibes:

Sweetcat

04-03-2009, 13:13

Hi adinic, you are so strong to have gotten as far as you have.:yelclap: With reflux it's either sink or swim and it certainly makes you strengthen up as a person. I am the same in that I try to take one day at a time and a routine really helps us. Frankie is 4 months old and has improved dramatically but like yourself I am always wondering when she will change back to how she was.
Nevertheless I am enjoying my little girl so much now and she is just a treasure to be with. I know that because we have done the hard yards I have proven to myself and to her that I will always be there for her no matter what. Whatever crops up we will deal with it with a smile on our faces. Gotta keep being positive:)

Sweetcat

04-03-2009, 13:18

gizmoducks - yes I know it's so hard to get family and friends to understand. I tried so hard to explain the condition with no luck. They made me feel like it was my fault or it was all in my head(yeah right!). We got the point where there comments were so harmful to my mental wellbeing that I simply shut them all out for a period. Sometimes thats just what you have to go. If they are not going to offer you practoical support (like coming over to help bounce screaming baby for 6 hours) them goodbye for a while. I remember calling my mum in tears one day and begging her to come over and help one night as I was not coping at all. She clearly said to me that she found it hard to cope with not enough sleep so she would not be helping me. I'll never forget that. It made me feel so alone and that in the end the only person I could rely on was myself. That was a hard lesson to learn.:crying:

madboysnmummy

04-03-2009, 16:03

nothing wrong with relying on yourself! I agree it does get to that hey....

OMG my reflux baby is sending me broke!

I hope we come up with a new solution on tuesday cos the gaviscon infant sachets at 14 bucks for a box of 30 just is too much on top of everything else. thank god the elecare is prescription and i can half the losec 20mgs to last longer.

Cmon tues hurry up!

missmilliesmum

04-03-2009, 17:22

madboysnmummy - Where are you buying your Gaviscon??? I only pay $6.95 for 30 Sachets!!! $14.00 is really expensive - I would shop around. I hear you about the money though...DH and I were thinking how easy our lives would be if DD had taken to BF and not had reflux...oh to dream about the next child!

Went to Paed today and he said he couldn't just start Amelia on Neocate as he had to show he had tried milder solutions first! GRRRRRR! So we have to try Peptic Junior first. Anyone else had this problem or tried this formula?

Terrible day today. Amelia won't stop screaming and won't eat or drink or sleep. Why is it always 2 steps forward...6 steps backwards??? That's reflux huh!

As for the family thing...I kinda lost my cool with DH's family on the weekend when they kept acting like I was making everything up about Amelia being so difficult. They must be feeling bad as MIL called today and was very sympathetic telling me she felt sorry for me and that it must be very hard. I told her she was very lucky none of her children had reflux and she agreed. A start at the very least. I had removed myself from them recently and not had much contact and after the weekend I think they must have realised that if they want to see me or their grandchild - they must be understanding and kind!!!

Sweetcat - When I complain to my Mum about how hard it is having a relux baby she just throws it back in my face by saying that being a mother is hard and that I was a terrible baby and she survived (I was a terrible baby..Many allergies and resp problems). However she will watch Amelia for a few hours to give me a break, but she refuses to feed her as she is so difficult, so it is only ever a very short break. Sometimes you just need your Mum to say...'It must be so hard - What can I do to help you right now?'

Hope you've all had a better day than me!

Pregnor

04-03-2009, 22:26

While Connor was diagnosed at 4 weeks with reflux, I thought we had been able to control it without medication, but the last few days I have realised it is not the case. I thought he was just a bad sleeper, but I read someones post about fighting to get them to sleep for 30-45mins, only to have them wake up 10 mins later, and then take another 30 mins to get him to sleep again. Today I had to let him sleep in my arms for over an hour, but at least hes not screaming or getting overtired. I am very grateful that I am not in anywhere near as bad situation as all of you. It is still very frustrating to have to walk around the supermarket with a screaming baby, having everyone you walk past say "aww. the poor thing is hungry" HE IS NOT BLOODY HUNGRY, IF HE WAS HUNGRY I WOULD FEED HIM, THEN HE WOULD NO LONGER CRY!!!
I also find it really frustrating that I can't enjoy him. We get about an hour a day where his is just happy, and all smiles and coos. The rest of my day is a battle to get him to have a sleep. I am soo soo happy he sleeps at night, I dont know how it happened, maybe cos he was so exhausted by the same time each night he developed a habit. I just pray that he keeps sleeping through. I do not cope without sleep at all well.

Originally the doctor put him on Zantac, he was better for a day or 2, then gradually slept less and less. The day I stopped he only slept 4 hours out of the night, and screamed constantly. I went to a different Dr, as the one I like is hard to get into. He told me 'maybe you could try mylanta' but didnt know what dosage and assumed the pharmacist could tell me. So I went to the pharmacy and she said 'oh no, you cant give that to babies, try this..' infacol. I was like he has reflux, and she was like, well you can't give him mylanta :hair: So from then on I decided to 'suck it up' and it did improve dramatically. We went to the chiro and put him on Infant Probiotics and he improved a lot, but has gradually regressed to how he was before, maybe because I can't cut every food that has some kind of flavour out of my diet forever.

So back to the Dr next Wed. I had an appt for me with the good Dr, so I'll just have to use it for bub, and I'll have to wait for the next one. At least I know this Dr believes in infant reflux.

madboysnmummy

04-03-2009, 23:12

missmillie - that is so cheap the cheapest i can get gaviscon infant for shopping around is 12 dollars where are you going?

felicity - i hope you get someone to listen thats your first step finding the right doctor. shop around if you have too or ask some mums for a good paed in your area and get a referal if you have no luck soon. It suck doesnt it esp for your first bub!

i am yet to bond with my bub too i love him but dont have the close connection yet. i love sleepy time cuddles i stay up for half an hour cuddling him .

today was better I have cut back the milk by 40mls a bottle now he is getting 180 5 times heaps less puke. seems hugry but settles quicker

missmilliesmum

05-03-2009, 09:46

Madboysandmummy - I see you live in Gawler? I am in Adelaide. I bought some more Gaviscon last night and they were $7.95 sorry, not $6.95 for 30 Sachets but still much cheaper than you can get! I buy them from a Pharmacy Called "Chemist King Discount Pharmacy" it is on Goodwood Rd, at Colonel light Gardens - Big yellow signage everywhere. So if you are ever down this way...I suggest you drop in and buy up big! They are a really good Chemist for baby stuff - Formula is always cheaper and nappies and bottles, wipes etc. I go there all the time.

madboysnmummy

05-03-2009, 10:02

wow thats still a difference!!! Ill be in the city at the wch on tues ill drop in then - thanks heaps its still half the price!!!

Felicity - also re the o he is HUNGRY - My first bub with reflux my mum said to me no hes just hungry and said he needs to be on solids and resumed to feed him some custard!!! at 6weeks!! And guess what?! It didnt fix him LMAO

katielou84

06-03-2009, 09:22

ejs

06-03-2009, 14:55

Hi guys,
Haven't been in for a while been away on holidays. But have some questions.
Does anyone have any info or experience with specialty shelf formulas for silent reflux ie. Goats Milk, Lactose Free, Soy etc
Went to see paed again and he confirmed the silent reflux and suspects a CMI or LI also. He said try a soy, goats or LF formula. Obviously this is the first step before prescription formula.
DD's probs are feeding refusal. It is so stressful.
Has anyone tried any of the above and what were the outcomes and any tips for me? I don't really want to try soy as I have heard some not so good things about soy.

Thanks in advance
:)

madboysnmummy

06-03-2009, 16:25

Hi everyone,

Can i jplease join you. I just spend hours reading through this thread and it has made me feel so much better and inspired to see so you all doing so well and helping you little ones. I now feel so much more confident that i'm not just a hopeless mother and that i can handle this.

My Zayd is almost 5 weeks and was diagnosed with silent reflux yesterday. After a couple of weeks of screaming all day (although sleeping ok at night), one day he spewed it up and i realised that it wasn't just wind. Luckily for us the doctor that i took him too yesterday absolutely agreed with me that it was reflux, he had so many signs of it. After reading all of your stories about trying to get a doctor to understand i feel very fortunate that we are hopefully going to get onto this nice and early.

felicityc i totally understant the screaming while shopping and getting all of the comments like everyone else knows what's wrong with your baby. It seems like people think that because you have a you baby and its my first that i just havn't figured him out yet.

Anyway i have a couple of questions for all of you reflux experts. The doctor prescribed Zantac, 2.5mL twice per day. However the chemist recommended that i should start with 1mL twice per day as 2.5 was quite a lot. What is your experience with the dose of Zantac. I agree with the chemist and would rather start on a lower dose and increase it if he needs it, however i just want to make him feel better asap.

Also, he keeps spitting it out and is refusing to swallow it. Any tips on getting it down?

Thanks again for a great thread.

Yes! Please do join us! This thread is for all us reflux mummies who need all the help and support we can because like you I have spent hours and hours surfing the net and found very little information that is helpful other than the symptoms and explanation. I am sorry I havent had any experience with zantac other than when I was pregnant for my own reflux. (i tell you what it worked well!) As far as getting it down if you are bottle feeding as you give the feed pull out the bottle squirt half ml in the mouth and quickly put the bottle back in. Most of the time mine doesnt even notice me squirt it in and is just glad to have his milk back. It works for me - you might not have any luck though! Good luck!!

Hi guys,
Haven't been in for a while been away on holidays. But have some questions.
Does anyone have any info or experience with specialty shelf formulas for silent reflux ie. Goats Milk, Lactose Free, Soy etc
Went to see paed again and he confirmed the silent reflux and suspects a CMI or LI also. He said try a soy, goats or LF formula. Obviously this is the first step before prescription formula.
DD's probs are feeding refusal. It is so stressful.
Has anyone tried any of the above and what were the outcomes and any tips for me? I don't really want to try soy as I have heard some not so good things about soy.

Thanks in advance
:)

I had no luck with Lactose free Milk in fact it was just terrible. When I lost my milk supply and got real sick with mastitis I put him on s26 lactose free and he had water coming out his bowels and screamed for 22 hours a day - no lie!!!!! It was so traumatic, we were made to persist from 3 weeks of age till 6 weeks and let me tell you that was the worse 3 weeks of my entire life!

The elecare gave his bowels a change to hear and have reduced the mucousy poos.

As for the soy - my sister tried and her bub refused the bottle she hated the taste and wasnt drinking

Didnt try goats milk - hmmm not sure why I didnt give that one a try prob should have. I had it as a baby and went brilliant on it.

Good luck with your choice

AFM - 4 days till my g/ent appt and you should see the list I got to take with me! He is definately doing better vomit wise on less milk volume, but is more unsettled and hungry? Not sure - I cant figure out his cries still they all seem to be a pain cry....

Sweetcat

06-03-2009, 16:48

Hi everyone, hope you are all having a good day (or as good as can be with reflux!).
Katielou - I would stick to the dose your doctor gave you. Did he weigh your bub first to determine the dose? As it's an adult drug they normally work out the bubs dose based on their body weight. Zantac is quite a safe drug with minimal side effects. Try it outr and perhgaps keep a little diary so you can record what is happening with the symptoms. If Zantac doesn't work talk to your doctor about Losec (this works slightly differently). Losec has worked very well for Framkie but only once they got the dose right. At first she was on a low dose (which didn't work) and then she has slowly crept up to a rather high dose but at least it's working now and there are no side effects.

Best of luck with everything. I'm glad you joined the group. As madboys mummy said we need to be there for each other. Parents with reflux tend to get little support so it's good to get help wherever you can.

Pregnor

06-03-2009, 16:49

Katielou I used the zantac. Did you taste it? its so gross! I would spit it out too if someone tried to put it in my mouth :laughing: I used to just syringe it down the back of his mouth, he got better with it. But it caused more troubles than it fixed cos it slowed down his bowels and he was constantly making 'poo noises' but never actually pooing! Also 2.5ml twice a day is heaps. I thought the Dr had written 2 mL twice a day. So I called him and he said that was absolute max dose, and to try 1mL first. I'm so glad I did, cos I'm sure his bum troubles would have been much worse if I'd given him more.

This arvo I got fed up with Connor not sleeping, so I gave him 1mL of Gaviscon and he coughed and gagged and screamed, but as soon as he settled down he went to sleep, AND i got him into his bed AND he has been asleep in it for OVER AN HOUR :smiliedance::smiliedance::smiliedance: I don't like giving it to him, cos the Dr. didnt tell me to give it to him and im only going via word of mouth. But we are going to see the Dr in 5 days so I might just use it once a day til then.

katielou84

06-03-2009, 17:42

Thanks for your replies. I'm breastfeeding which makes things easier in some ways but harder in others. I think that i'll try the 1mL for a few days and see how we go, then we can double check at our doctors appointment next thursday. Luckily we still are yet to have his 6 week check with the paed so i can talk to him too.

I decided to put ds in the hug-a-bub this afternoon because he'd been very unsettled all day. He winged for a while but then fell asleep and stayed asleep while i managed to fold the washing and other jobs that are normally impossible. Up until now we have not had much success with putting him in the hug-a-bub but i think its just a matter of settling him once he's in and then we're right. When DF got home i told him that from now on DS was my latest accessory and i'll just wear him all day if i have to.

We also decided to give DS a dummy which was sort of hard cos i think i got jealous of it (pretty silly because at least he is comfort sucking that instead of me so i should be happy). It has been very soothing for him though which is the main thing.

Nowhere

06-03-2009, 18:03

hi guys not been in here for a while thought id pop in an say hi, sorry to here all our little refluxers ae not going well have to say its a bit of a given with a refluxer isnt it GRRRR

Im going to have a rant please feel free to ignore me lol every one else does

I HATE REFLUX AND ALL OTHER GI ISSUES that my DD had they suck BIG time I can deal with respiratory issues seizures etc etc the list goes on with my little monkey but GI issues SUCk, now I always have hated it so what brought on the rant you ask WELL this is what

My neally 3 year old is not even 9 freakin kilos yet, she is fed 24 hours a day into her bowel she is NEVER unhooked as in ever we pump as much food in as we can but if we up the calories to high she cant tolerate it, here is the thing she has very very slow motility in her bowels ( yer stomach is prety much useless) So we put her feeds in and they slowly move thriugh she cant poo like a normal person when she needs to go her bowels get even slower and that feeds reflux from her bowel into her tummy, so we know to give her meds to make her poo but when it comes out its a flood of liquid poo GRRR is a night mare she cant poo but has loads there KWIM so when the calories are to high she has more poo there nothing absorbs just sit there

Anyway the pead and i are trying to up her feeds, you know what hapened instead of moving through it all sat lumped up in her small bowel where her tube goes in it was all swollen and sore GRRR so we had to lower it again, then tried again to up it and what do you know it leakes out of the god dam stoma, the stoma that is done so diferntly that is should NEVER leak well it is im sick of it

And not to mention my litle monkey split her stoma bag today so I got GI goop all over me again YUK YUK YUK and the constant screaming her freakin head of all day or being a angry little syco cause she has a sore tummy

im over it, oh and DH is working this saturday and decied he is going rideing all day sunday so there goes my plan of scrubing my house from top to botton bit hard with a screaming toddler that wants me to be next to her 24 7

oh and tonight after her bath I have to change her stupid stoma bag seen as the dam thing leaked to thats going to be a barrel of laughs as well

Im so over it

reAllytee

06-03-2009, 20:13

Amy - The fact you got through the day :hugs::hugs::hugs::hugs:

Move to Syd ... Then all us nutters over here will come harass you all the time :p

Are you able to get respite ? You really need a break hun, I know its not really possible but even if just for a few hours ... Tell your DH that he will have angry internet ladies after him soon LOL ! He needs to give you a break !!!!

Wish I was in the same state to at least come over with yummy cake !!!!!

gizmoduckus

06-03-2009, 21:07

:hugs: Mikenzee's Mum. I hope you have a better day tomorrow.

madboysnmummy

06-03-2009, 23:27

:hugs::hugs: Thankyou Amy for posting - I really hope it helps to get it out :hugs::hugs:

You do deserve a break its just not fair is it.

I hope tomorrow starts off better for you x x x

Fingers and toes crossed thinks start improving for miki so you get a break.

Pregnor

08-03-2009, 14:59

Just a quick question...

Does anyone else find it HARDER to cope when their partner is home?
I just find that DF gets a bad case of the poor mes. Yesterday my bad back started to play up, so i asked DF to help a bit more in regards to picking him up and putting him down. Now today his back is sooo sore from having to carry him around all the time.
He also does stuff like trying to 'help' when bub wakes in the night. but at night i NEVER change him or there is no way he'll go back down, he also turns on all the lights and makes sure Connor is completely awake :rolleyes: then leaves me to feed him and goes back to bed in the other room so i dont wake him up. THEN in the morning he whinges about how tired he is from being awake at night for ten mins :hair:
He also does the "i think hes hungry" "i think hs wet" he cant just accept that he is crying cos hes in pain, and hasnt slept enough, and there is nothing we can do except cuddle him. And after 10 mins of crying he just hands him back to me.
i am realy greatful the amount he helps with housework on the weekend and everything, and how hard he tries, i just seem to be so much less stressed when i'm by myself with him.

Sweetcat

08-03-2009, 17:36

Oh Amy.....millions of :hugs: to you. I agree with reAllytee that if you were in Sydney we could all come over and help. It sounds like you really need some respite. Is there no service that you can turn to seeing as you have such a sick child? Again......big :hugs: to you.

madboysnmummy

08-03-2009, 22:13

felicity - very soon you will realise you can depend on no one but yourself :( it is horrible but true and agree. Even if someone else feeds my bub it can cause me more grief later on in the day.

I hate to say it but I would rather just do everything myself. Mind you my DH is good he knows to do everything exactly right and only does what I ask and leaves the decision making re feeds etc to me which help

hope your back is better soon..

Mikenzees mum - How are you now???? I hope your week end improved - I have been thinking of you x x

Nowhere

08-03-2009, 22:32

thanks for all the hugs guys your all so nice

LOL about the harder when hubbys home, i agree lol there not that helpfull, ROFL DH had the house to him self today for 5 hours as Miki and I was at a baby shower when i got home DH had done nothing at all not got of his laptop he hadnt even put mikis toys away that i had left out when I left, ( seen as he was doing nothing thought he could move them lol ) all he did was make his noodles for lunch and thats it men sheesh

Hows did all our little fluxers go this week, Hope they all have a beter week this week

CrankyAndTired

09-03-2009, 10:56

Hello everyone! Mind if I join in?

I only discovered this thread yesterday, and although I haven't had time to read through properly, its so nice to find somewhere people understand what a nightmare reflux - and reflux related pain and complications are...

My little boy, Rome, is just over 4 months old and so far its been pretty terrible. He has reflux, cow & soy protein allergies and terrible lower wind pain. His reflux is silent most of the time which means he gains weight fine but has screaming fits of pain at times and is generally unsettled all the time.. I keep hearing how much sleep babies need at this age (approx 16+ hrs..) we'll Rome is lucky if he clears 10-11 in a 24 hr period. I think he only sleeps when he's physically exhausted. He naps for a max. 30mins during the day, and wont be resettled.

He can't take more than 80mls at one time so we have to feed him all day long.. He used to be able to take 100mls but seems to have gotten worse lately.. He's supposed to be taking 150-180ml bottles at his age and weight..

We're on the max. dose of Losec and Xantac, but still coughs all the time and he's on Neocate but he still is quite unsettled and seems to be so full of wind. Does anyone else find this?? At night he's exhausted by 6pm but either doesn't sleep, or naps and wakes up screaming with burps and farts... and it goes on for hours. Sometimes I'm holding him in my arms till 11pm, then he finally passes the wind and the pain goes, and the poor little man closes his eyes...

A few weeks ago we tried rice cereal, and 4 days later we ended up in the ER at Randwick Children's Hospital because he started passing blood and mucus again, and literally was screaming for hours at a time. It turns out he had a bug but I also think the rice cereal made his constipation worse - and I was unsure if he was constipated at the time but he hasn't been good since then, even though the bug is gone, he's up 8-10 times during the night...

We have an appt with a paed GI I've heard good things about - Dr Reuben Jackson this week.. We havent seen him yet but when we got the appt (we got an early one thanks to the great ER dr) he passed a mesage threw to us that he would see us soon, and to start on Lactulose in the meantime. He allso recommended switching to NEocate LCP, which we've done..

But the lactulose seems to be making Rome's wind pain worse, not better - although he has been having more frequent BM, which is good - usually he can go up to 3 days and be in a lot of discomfort... I'm keeping him on the lactulose on it because I've heard such good things about Dr Jackson and I really dont know what else to do... but I'm really scared that Jackson won't be able to help us either... Our paed has given up on us and seems to think Rome's issues are caused by my mothering... :confused:

Sorry for the rant girls!! Just over it, really thought it would be easier by now..

Miki's Mum :hugs: Sorry to hear you've had it so tough, hope you enjoyed the baby shower

Sweetcat :wave: Hello!! See you in NovMum's chat..

Sorry to hear some DH's aren't much help - mine really tries to help with bottles and odd jobs but when it comes to settling Rome he just doesnt seem as successful as me.. which is sad. I think he feels a bit rejected by Rome sometimes.. he hates not being able to take away the pain, as do I... :gloomy:

Sorry for such a ranty post girls, hope you all had a good weekend..

Liv x

madboysnmummy

13-03-2009, 09:11

Hi Liv thanks for joining in. Im sorry ive been kinda MIA while i have been sorting out my man

my little boy forever coughs and sneezes too. in fact my ds1 did for ages and even had his tonsils out at 14 months cos his throat got so bad.

how did you get on with dr jackson? your story is very familiar to me its amazing what some of us ho through with our bubs

As for my appt with the g/ent he was a comlete monstor for me in the appt, he vomited everywhere arched and cried and one unsettled bub so there wasnt much need for me to talk. i have been told he has severe reflux with delayed gastric emptying and laryngomalacia

so what to do

i was told to try add karikare thickener - OMG what a disaster - HUGE REACTION big time watery squirts, salivating to the max, vomiting gluey slimey stuff, really windy and un settled half drowned in his own mucous and vomit at 2am in the morning. It was so scarey. So far the worst thing that has happened I was comforting a baby that was middle to toe in diarr and projectile vomiting as he was still pooing and yes you guessed it no nappy. so disgusting and scray cos he held his breath for ages and paniced and went floppy. so so scarey. I have since kicked the tin of thickener across the street.

i used it for 2 days up until that episode before i realise it was that.

And guess what I rang the hospy yesterday and his doctor is on hold till the 23rd of march :thumbsdown:

I also have to increase his calories to 30 cal feeds so with the elecare he is noe getting 4.5 scoops to 180 mls. He was concern about how hungry he is acting like he hasnt even been fed. Duee\ to the refluxing of his milk so hopefullywith the higher cal feeds he can start being more satisfied and put on more weight - fingers crossed!

He still has diarr thats very mucousy but its settling to not as often.

so now im just plodding along when his tummy settles and if he is still hungry after a week i have been told to try introduce some rice cereal.

fingers crossed we get somewhere then back to doctor in 2 months

how is everyone else plodding along???

bebealice

13-03-2009, 15:08

has anyone ever thought that wind, diarrhoea and lower gut pain could be from zoton? cracked about two weeks ago cos on maximal doses of zoton, motilium and mylanta and bub screming sleeping for 30 min in 3 hr cycle (only thing that eases pain is feeding) so stopped all medications. interestingly symptoms of pain, gas green poo started to settle and was wondering whether he could get an infection from lowering of acids with meds. unfortunately after six days screming blue murder with what i can pick as heartburn pain so restarted zoton and within two days again diarrhoea, gas+++, colicky pain. now on antibiotic as well but think this is also stirring up reflux. planning gastroscopy in a week after seeing paeds gastroenterologist. paeds also thinks i am neurotic as tells me to call but then when i call weekly i am obviously too much. was told nothing more u can do

madboysnmummy

13-03-2009, 15:23

i think the paed thought i was neurotic too LOL

My g/ent didnt he took me serious cos he saw my monstor boy in action. I got lucky this time I hardly had to speak

i sometimes wamder what side effects the medication gives, but I am sattisfied that without the losec he is in so much pain and dicomfort even lowering the dose was bad enough!

wow i cant believe my boy will be 4mths on the 20th its going so fast!

reAllytee

13-03-2009, 17:14

Hello everyone! Mind if I join in?

I only discovered this thread yesterday, and although I haven't had time to read through properly, its so nice to find somewhere people understand what a nightmare reflux - and reflux related pain and complications are...

My little boy, Rome, is just over 4 months old and so far its been pretty terrible. He has reflux, cow & soy protein allergies and terrible lower wind pain. His reflux is silent most of the time which means he gains weight fine but has screaming fits of pain at times and is generally unsettled all the time.. I keep hearing how much sleep babies need at this age (approx 16+ hrs..) we'll Rome is lucky if he clears 10-11 in a 24 hr period. I think he only sleeps when he's physically exhausted. He naps for a max. 30mins during the day, and wont be resettled.

He can't take more than 80mls at one time so we have to feed him all day long.. He used to be able to take 100mls but seems to have gotten worse lately.. He's supposed to be taking 150-180ml bottles at his age and weight..

We're on the max. dose of Losec and Xantac, but still coughs all the time and he's on Neocate but he still is quite unsettled and seems to be so full of wind. Does anyone else find this?? At night he's exhausted by 6pm but either doesn't sleep, or naps and wakes up screaming with burps and farts... and it goes on for hours. Sometimes I'm holding him in my arms till 11pm, then he finally passes the wind and the pain goes, and the poor little man closes his eyes...

A few weeks ago we tried rice cereal, and 4 days later we ended up in the ER at Randwick Children's Hospital because he started passing blood and mucus again, and literally was screaming for hours at a time. It turns out he had a bug but I also think the rice cereal made his constipation worse - and I was unsure if he was constipated at the time but he hasn't been good since then, even though the bug is gone, he's up 8-10 times during the night...

We have an appt with a paed GI I've heard good things about - Dr Reuben Jackson this week.. We havent seen him yet but when we got the appt (we got an early one thanks to the great ER dr) he passed a mesage threw to us that he would see us soon, and to start on Lactulose in the meantime. He allso recommended switching to NEocate LCP, which we've done..

But the lactulose seems to be making Rome's wind pain worse, not better - although he has been having more frequent BM, which is good - usually he can go up to 3 days and be in a lot of discomfort... I'm keeping him on the lactulose on it because I've heard such good things about Dr Jackson and I really dont know what else to do... but I'm really scared that Jackson won't be able to help us either... Our paed has given up on us and seems to think Rome's issues are caused by my mothering... Sorry for the rant girls!! Just over it, really thought it would be easier by now..

Miki's Mum :hugs: Sorry to hear you've had it so tough, hope you enjoyed the baby shower

Sweetcat Hello!! See you in NovMum's chat..

Sorry to hear some DH's aren't much help - mine really tries to help with bottles and odd jobs but when it comes to settling Rome he just doesnt seem as successful as me.. which is sad. I think he feels a bit rejected by Rome sometimes.. he hates not being able to take away the pain, as do I...
Sorry for such a ranty post girls, hope you all had a good weekend..

Liv x

YAYAYA !

You are seeing my little guys GI !!!!

He is lovely & will go to the ends of the earth to help you !!!

I love him can you tell :valentine:

We just saw him on Wed actually & I still love him as much :laughing:

He will help you & he wont give up on .... He was the only one who listened to me & helped me.

He actually admitted us almost a year ago now & possibly would have done the same with you guys but he no longers works with SCH so has no admitting rights etc.

What he has started you on will take time to see a difference iykwim because they both have to do their job.

Its awesome that you are seeing RJ though ... He is awesome !

____________________________________________

We are doing ok we still have bad nites but overall G is finally coming on leaps & bounds.

Its just food that's our issue now as it causes a lot of problems with him & his darned bowel which doesnt like to behave lol !

So hang in there ladies !!!!!

:hugs:

Amy - As always :hugs::hugs:

Nowhere

13-03-2009, 18:04

Lachysmama

14-03-2009, 02:04

I am so sorry to everyone who has replied to this post. Unfortunately I am in exactly the same situation & can't write much as 1. I am at work (at this crazy hour!) 2. I haven't slept in nearly 3 days as my 2 yr old refluxer has been awake screaming for the past 2 nights.
That sums us up a little!
I am sick of being told he will grow out of it, I'm sick of being told perhaps we need to take him to a sleep clinic, I'm sick of being told 'he's just being a toddler' before it was 'babies do cry you know' only a rufluxers parent can know the real pain felt when their baby is screaming in pain and thre is nothing you can do about it.
We have spent thousands of dollars on appointments and still aren't far with things.
Will this ever end?
Good luck to everyone... I don't know what else to say, but reflux has torn out part of our souls! :(

madboysnmummy

14-03-2009, 09:15

lachysmum - you must be exhausted! I dont ever remember a night that my 2 year old has not woken screaming it just aweful - just when you think its gone it returns everytime he runs around too much or giggles too much along come the hiccups and spilling in his mouth. poor thing did it at tea last night.

I still cant believe I have 2 refluxes in my house - so not fair!!!!!

madboysnmummy

14-03-2009, 13:56

Nowhere

14-03-2009, 21:52

reAllytee

15-03-2009, 05:03

:barf:
I got one bub that is vomiting full feeds here at the moment, any tips or advice guys?

I think I need to figure out a way to reduce the amount of milk, but feed more often?

It is coming full speed out of nostrils and mouth today he is full blown purjing and yet to keep a bottle down today.

Anyone experienced with the delayed gastric emptying as well that can offer me some advice

:hair: im really lost and at my witts end here :(

Listen to whatever Amy says :laughing:

Seriously if I hadnt had her & kiwibird as support over the last 18mths I dunno where I would be !!!

Definitely push to get the gastric emptying sorted cause it sounds like you may need the meds for it if things continue down this path !

G could barely keep anything down half the time it was a nightmare ... I will never get over the way he used to vomit. Ever ! We used to call him 'Exorcist Boy' cause he seriously put the possessed girl to shame LOL ! Things are a lot better now that he has grown & his gut seems to be maturing & we no longer use the E-Mycin for gastric emptying but it was such a life saver for us. Sadly the lounge or carpet will never recover LOL.

I have decided that I should never post in this thread that things are going ok ! Every single time I do we go backwards LOL !!!!

I have been awake from Fri nite onwards ... Yay :rolleyes:

G is so bad tonite I dont know whats going on.

He has woken screaming 10 times & has now been up with me since 3am

I swear it sucks ... I hate this 2 steps forwards & 2 steps back *sigh*

:dizzy:

ejs

16-03-2009, 21:00

I know that my LO is nowhere near as bad as many of your babies on this thread but I need to have a winge. Still refusing feeds, noone can give me an answer. Keep her on the Losec (even though it isn't doing anything), maybe a CMI although she has no rashes or any other symptoms of one, and the latest at the docs today when I went for her shots, 'just ride it out she'll grow out of it'. Mmmm all well and good to say, but I have a baby that refuses to eat and I have resorted to basically forcing her mouth open to even get the bottle in there in the first place. It sounds cruel but it's what I have to do.
I know that she must have the worst bottle/feeding association but what do I do???

madboysnmummy

16-03-2009, 21:42

OMG ejs

I feel it too

I just got back from the gp today and was told the old accept it dear and pat on the back, honestly that is not what im going to do not when my bub is vomiting the way he is, my solution from the gp was feed him 30mls every half an hour or try 60 mls and hour of milk to see how he goes.

I have been so upset this afternoon. why the heck dont they take us mums seriously and do more for our bubs? we know them best they should listen to us!! dh is going to call our paedi tomorrow for more advice i cant seem to talk about it without getting upset :(

madboysnmummy

16-03-2009, 21:45

Definitely push to get the gastric emptying sorted cause it sounds like you may need the meds for it if things continue down this path !

G could barely keep anything down half the time it was a nightmare ... I will never get over the way he used to vomit. Ever ! We used to call him 'Exorcist Boy' cause he seriously put the possessed girl to shame LOL ! Things are a lot better now that he has grown & his gut seems to be maturing & we no longer use the E-Mycin for gastric emptying but it was such a life saver for us. Sadly the lounge or carpet will never recover LOL.

I have decided that I should never post in this thread that things are going ok ! Every single time I do we go backwards LOL !!!!

I have been awake from Fri nite onwards ... Yay :rolleyes:

G is so bad tonite I dont know whats going on.

He has woken screaming 10 times & has now been up with me since 3am

I swear it sucks ... I hate this 2 steps forwards & 2 steps back *sigh*

:dizzy:

I was told today that you can only use the meds for delay gastric emptying in over 12 yr olds cos of the side effects? hmmmmm

How are things going for you now?? getting sleep?

madboysnmummy

19-03-2009, 14:54

just thought I would pop in ans say hi to all the reflux mummies!!!

just to let you all know we are having a barium swallow done on monday for owen just to make sure everything else is ok and its nothing more than reflux my paedi has taken control and is looking into things and helping me with a better feeding plan. things are improving but still pretty rough.

hope its all good news and nothing bad.

Pregnor

20-03-2009, 19:56

Hey everyone, I hope you are all doing well :D

We got Connor put on Nexium and some stuff called Donnalix (which i think is useless, but we are still using it). We started using it Wed, that night... COMPLETELY feral screaming all night. I had about 2 hours. Then gradually it got better. Monday he was a complete angel. Then back to feral, and barely slept wed. I was at breaking point. So last night DF came home with a tin of S26 AR so I could sleep and he could tend to him... it was so funny he was like 'look, its anti-reflux... he'll stop spewing all the time' :laughing: Men are so simple.
So we gave it to him, he loved it, and slept from 8-5.30 :smiliedance:

Just out of curiosity, the tin says its not a general use formula and should only be used under medical advice. Should i have spoken to the Dr first, or the CHN? or is it just so that you have your baby diagnosed with reflux first?
we are probably going to give it to him every night, DF loved being Mr. Mum
Has anyone else used it, did they get constipated from it etc?

reAllytee

20-03-2009, 23:12

ejs - Yep I think some doctors just figure thats all they can do :rolleyes: Are you seeing a Paed ?

Thats good news madboys ! Lets hope things get a little easier & on track now !

Felicity - Ok I may cause controversy with this but here goes it :o

AR formulas are often a God send for mums with spewy babies ... Yanno the ones that bring up a little but are otherwise happy enough but for the rest it can cause a complete disaster ...

Its best to speak with someone about it yes because there may be other issues to look at first & in all honesty I doubt a Paed would advise it but thats my experience !

They are a thickened feed so yes they are notorious for causing constipation which in turn can make the reflux worse as the bowel fills & then pushes against the tummy etc which all causes a vicious cycle ( thats the basic run down lol ) because whilst many bubs are 'happier' cause they can keep a feed down etc they are often worse because of the constipation iykwim !

The other problem with introducing formula is while its 'suited' for babies it isnt optimal in terms of it being made from cows milk means its harsher on the gut & often those with reflux have immature guts so that means they dont really tolerate formulas all that well either. Often the reflux is being caused my an allergy &/or intolerance which cows milk is often the biggest cause which is why a lot of bubs get worse when changing to formula & then the mums are going insane because their doctors said all will be fine yet it isnt.

Has anyone talked to you about cutting certain foods from your diet to try to help the reflux ? If not then I suggest you give this a try because it can truly make a HUGE difference. Cows milk/ dairy, soy, wheat, nuts, caffiene & citrus are usually the big offenders but some bubs also react to other foods. Keeping a food diary can often help pinpoint problems otherwise sometimes a total elimination diet is the only way to go. Also remember that it can take 2wks for an offending food to leave your system & bubs so it will take time to see a difference with some babies !

Anyways hope that helps a little !

We are still having a shocking run & I am freaking well over it :hair:

Nowhere

20-03-2009, 23:35

I HATE
GI ISSUES
:hair::banghead::hissy::crying:

ejs

21-03-2009, 18:14

ejs - Yep I think some doctors just figure thats all they can do :rolleyes: Are you seeing a Paed ?

Yep going back again! I think that the reflux is being cause by a CMI as she is only a problem for feeds, cries and refuses them totally. I am trying to make feeding more enjoyable but it really hard when I have to actually force her mouth open to get the bottle in ATM and she just WON'T eat. Between feeds she is fine and she is on Losec and it has done nothing, so I am thinking that reflux is secondary to other issues. So a prescription formula will be what I demand when I see him. He suggested soy but I don't want to try that as I have heard that soy can cause other issues.
She is healthy enough at the moment but her weight gain has deteriorated alot and I often wonder does she need to get admitted to hospital before anyone will listen to me??????

kiwibird27

21-03-2009, 19:00

I was told today that you can only use the meds for delay gastric emptying in over 12 yr olds cos of the side effects? hmmmmm

How are things going for you now?? getting sleep?

:laughing::laughing::laughing:

You need a BETTER doctor.. Erythrymycin is an anti-biotic but in smaller doses is used to speed up gastric emptying in under 1 year olds.. Domperidone often used when E mycin stops working, usually at around 1-2 years of age...Has he got proven slow stomach emptying though??? Maybe u need to look into surgical options if it's really bad... A Pyloraplasty may b called for???

reAllytee

21-03-2009, 19:04

Yep going back again! I think that the reflux is being cause by a CMI as she is only a problem for feeds, cries and refuses them totally. I am trying to make feeding more enjoyable but it really hard when I have to actually force her mouth open to get the bottle in ATM and she just WON'T eat. Between feeds she is fine and she is on Losec and it has done nothing, so I am thinking that reflux is secondary to other issues. So a prescription formula will be what I demand when I see him. He suggested soy but I don't want to try that as I have heard that soy can cause other issues.
She is healthy enough at the moment but her weight gain has deteriorated alot and I often wonder does she need to get admitted to hospital before anyone will listen to me??????

Sadly for us hospital was the only way I got listened to & got G sorted but I hope you dont have to resort to that :hugs::hugs:

Yep demand the script formula even if he tries Pepti Jr first which isnt as broken down as the likes of Neocate or Elecare but its at least a stepping stone so you KNOW that if things done improve on that then you need the fully elemental formula !

It sucks when no one will listen :(:hugs:

ejs

21-03-2009, 19:17

Sadly for us hospital was the only way I got listened to & got G sorted but I hope you dont have to resort to that :hugs::hugs:

Yep demand the script formula even if he tries Pepti Jr first which isnt as broken down as the likes of Neocate or Elecare but its at least a stepping stone so you KNOW that if things done improve on that then you need the fully elemental formula !

It sucks when no one will listen :(:hugs:

Hey reAllytee,

You seem to know alot about this sort of thing. What is the differnce between the script formulas? ie.Pepti Jnr, Neocate etc And what would they do for a baby with a CMI? How long would it take to see a difference?
All I have learnt about them I have read here on the hub. And I have also read they can be quite yucky tasting.
But would I be right in saying that if she has an intolerance and her guts are sore etc from the CMP then a formula with this broken down would be easier for her to digest so her tummy will be able to handle it better?
I have also read that they can grow out of these things around 12-24months.
Thanks heaps I know you have alot of experience with this sort of thing.
:)

Nowhere

21-03-2009, 20:57

:laughing::laughing::laughing:

You need a BETTER doctor.. Erythrymycin is an anti-biotic but in smaller doses is used to speed up gastric emptying in under 1 year olds.. Domperidone often used when E mycin stops working, usually at around 1-2 years of age...Has he got proven slow stomach emptying though??? Maybe u need to look into surgical options if it's really bad... A Pyloraplasty may b called for???

yes i agree you need a new dr that is actualy laughable the little knowledge some drs have, they use domperadone erythrycin on tiny litle ones if needed

As for a pyloryplasty you would want to be trying all the meds first and seeing if bubs grows out of it first KWIM

reAllytee

21-03-2009, 21:54

Hey reAllytee,

You seem to know alot about this sort of thing. What is the differnce between the script formulas? ie.Pepti Jnr, Neocate etc And what would they do for a baby with a CMI? How long would it take to see a difference?
All I have learnt about them I have read here on the hub. And I have also read they can be quite yucky tasting.
But would I be right in saying that if she has an intolerance and her guts are sore etc from the CMP then a formula with this broken down would be easier for her to digest so her tummy will be able to handle it better?
I have also read that they can grow out of these things around 12-24months.
Thanks heaps I know you have alot of experience with this sort of thing.
:)

Yep they are FOUL formulas ... They stink & they taste rotten BUT yanno they work soooo ya cant knock 'em LOL !

Pepti Jr is usually a step that many Paeds take first up because the Gvernment prefers this to be trialled first cause its cheaper ;) It isnt as broken down as the others but is partly so that the protiens arent as recognisable to the body for it to react iykwim !

Neocate & Elecare are fully elemental formulas which are completely broken down so that the body cannot register anything. Both have different bases so a child can still react to one & not the other ... For us Elecare seemed to be great but then G reacted to this & we changed to Neocate which has been a dream !

These are the formulas that are used for kids with intolerances & various other issues when for one reason or another they cannot tolerate 'normal' formula or breastmilk but they usually like to trial you on a few other options like soy, goats or HA formulas before say trialling Pepti ... Some Paeds are great though & put you straight onto Neocate or Elecare cause they know their stuff sadly some dont know anywhere near enough so flounder with kids with issues like this which is why seeing a Paediatric GI is often the way to go.

It would be very beneficial for bubs because at this point their gut is being damaged while left on a 'normal' formula & going onto one of the script types will mean that her gut will be able to rest & heal .... It can vary as to how long it takes because it can depend on the damage but you will see some difference in a matter of weeks but the rest can take longer iykwim !

Being that bubs is also refusing to feed suggests that she also knows it makes her sick iykwim so she doesnt want it, so there is a good chance things will do a complete 180 once she is on a script formula.

Yep most bubs tend to outgrow their issues from anywhere around the 10 - 24mth mark but some kids take longer & some sadly have it for life its a case of seeing what happens ....

Hope that helps !

ejs

21-03-2009, 22:02

Yep they are FOUL formulas ... They stink & they taste rotten BUT yanno they work soooo ya cant knock 'em LOL !

Pepti Jr is usually a step that many Paeds take first up because the Gvernment prefers this to be trialled first cause its cheaper ;) It isnt as broken down as the others but is partly so that the protiens arent as recognisable to the body for it to react iykwim !

Neocate & Elecare are fully elemental formulas which are completely broken down so that the body cannot register anything. Both have different bases so a child can still react to one & not the other ... For us Elecare seemed to be great but then G reacted to this & we changed to Neocate which has been a dream !

These are the formulas that are used for kids with intolerances & various other issues when for one reason or another they cannot tolerate 'normal' formula or breastmilk but they usually like to trial you on a few other options like soy, goats or HA formulas before say trialling Pepti ... Some Paeds are great though & put you straight onto Neocate or Elecare cause they know their stuff sadly some dont know anywhere near enough so flounder with kids with issues like this which is why seeing a Paediatric GI is often the way to go.

It would be very beneficial for bubs because at this point their gut is being damaged while left on a 'normal' formula & going onto one of the script types will mean that her gut will be able to rest & heal .... It can vary as to how long it takes because it can depend on the damage but you will see some difference in a matter of weeks but the rest can take longer iykwim !

Being that bubs is also refusing to feed suggests that she also knows it makes her sick iykwim so she doesnt want it, so there is a good chance things will do a complete 180 once she is on a script formula.

Yep most bubs tend to outgrow their issues from anywhere around the 10 - 24mth mark but some kids take longer & some sadly have it for life its a case of seeing what happens ....

Hope that helps !

It does thanks!!!! I want to be well armed before I get to the paed appt. I will just have to do my best until then as I can't get in for another week.

But he said that if things don't improve then a prescription formula was the way to go, so I am pretty sure he will give me one.

The other problem is we are in the process of moving interstate so I want to get a prescription for one of these formulas before we move otherwise I will have to start all over again with another paed!!!!

Why can't they just accept that mother knows best? I am sick of defending myself for being worried, when everyone just goes, 'she'll be fine'
:hair:

gizmoduckus

22-03-2009, 10:30

Gees, I guess I have been lucky having a pediatrician who has listened to me right from the start. :hugs: to everyone who is having problems with theirs.

My pediatrician put DS2 on to Neocate after extreme rectal bleeding. He has gotten a lot better on it so he thinks that it all points to a protein intolerance. Can you find out for sure or do you just go with whats working?

Also, he recommended stopping the losec to see if the reflux was linked to the intolerance and if neocate was enough to keep it in check. We did that for a week but found that he got worse again. Has this happened to anyone?

madboysnmummy

22-03-2009, 13:01

cant wait till tomoorow when our little man has his barium swallow at least we will get some peace of mind.

I have decided only to deal with my paedi he seems to be the only one talking sense atm. My GP has been dissapointing I must say esp with the there is no safe meds for delayed gastric emptying. Hope we can move on after tomorrow.

Im still up to 12.30pm every night and thats after he has 2 catnaps during the day still. thank god he sleeps till 7.30!

He was a bit constipated yesterday and has a rough evening, but thats what you get i guess.

does anyone read the parenting magazine?? there was a great article that descires my little monkey to a tea I actually thought I was reading a story about him. goosies.

gizmoducks - I will not stop losec right unless i was gauranteed a better drug we just dont cope without it!

mikenzees mum - I HATE GI ISSUES TOO ESP FOR YOU! Another poo incident??? I hope miki is ok?!

thanks guys for the info on e-mycin too x x im going to talk to the paed on tues after our tests.

bebealice

23-03-2009, 22:49

What a stressful time this all is - have just been down to Brisbane for assessment by paeds gastroenterologist who first one to suggest CMI - hadn't really even heard of it! Initially didn't believe it but dutifully went off dairy as am breastfeeding but then "cheated" and had a cappuccino and bub unwell all next day. Symptoms are of reflux which is separate but also diarrhoea, severe colicky abdo pain and very gassy - does this sound like what CMI causes? Had a gastroscopy three days ago which shows signs of reflux despite Losec 10mg tds and very floppy valve to stomach. Feel good in some ways that have identified possible problem but ****ed off that have this continuing nightmare over last 11 weeks of bub just screaming constantly and paeds telling me nothing else we can do - obviously has no idea about CMI! Also a bit deflated that thought once stopped dairy that would have this happy smiling baby but still very gassy and abdo pain - takes me 30min to get to sleep then wakes after 30 min. Just assumed would improve quickly. Has anyone else had similar problems with baby and has anyone successfully continued breastfeeding - not sure how long i can last tho as it is just hell for everyone in family.

bpato

13-04-2009, 18:16

Hi All

This thread is just want I need at the moment.

Here is our story:
DS vomiting, screaming baby, fought his pead for nearly 6 months before GP sent us to pead gastro. Diagnosed with reflux and put on Zoton. Like a different child in days. Did and endo at 18 mths. Things looked good, apart from some inflamation in upper intestine. Tired to stop meds several times to no avail. Have been off meds now for nearly 2 months and are going into hosp in 2 weeks for check. He is now 3 1/2.

DD didn't show signs until 5 months, her pead put her on losec asap. Got serve wind and was put on Zoton and again was like a different child. Recently reduce dose from twice a day to once. She is now 21 months

Where I am at now. I am going nucking futs becuase niether them will eat anything, but crap. It is a continual battle to get them to sit and eat, and I am sooooooooooo fed up that I have given up. I don't know what to do anymore. I am sick of fighting the same battles everyday. I would love to able to say here is your dinner and the two of them just sit and eat it. Doesn't matter what I cook the both just look at it and walk away. IF one more person tells me they will grow out of it I will hit them I swear.

Any advice would be great, or just to know I am not the only who deals with this everyday would be reassuring.

Belinda

madboysnmummy

14-04-2009, 12:33

yep my ds1 is the same he is a very picky eater but ds2 will eat anything (never had reflux) you can see a huge difference between the one that does and doesnt have it even in behaviour. I just give him small snacks all day long rather than larger meals he seems better on finger sized portions. So he eats what I want, butr not as a huge meal.

Im still alive everyone with my ds3 he is now on apples, pears, banana and pumpkin. And he still mega chucks, but is alot more settled. And we still have losec 20mg and 2 sachets of gaviscon in each bottle. The Elecare is doing wonders too.

My question is Apples - has anyone had any luck with apple? I think it may be the reason he wakes at 2 every night now drowning in mucous and refluxing like crazy. I think it coinsided with introducing apple.

missmilliesmum

14-04-2009, 16:01

madboysmummy - DD's Speech pathologist said to avoid apples as they are the most acidic fruit (aside from citrus fruits obviously, which they are too young for atm) and can cause problems for refluxers. I give DD pear instead of apple and she likes it better as it is generally sweeter.
How did DS3's Barium Swallow go? Did it just show severe reflux? That's what DD's BS showed. We too are sticking to 20mg losec daily and 2 sachets gavison in every bottle, but still using S-26 Gold as DD flat out refused the Pepti-Junior.

We have had a shocking 2 weeks. Relux as per usual :rolleyes: but also teething and then gastro! Fun times! It's hard enough getting DD to drink anything without additional problems!

We have survived and she is drinking better, but still off her solids.

If it's not one thing, it's another!

I am constantly saying to DH...I just want ONE good day, just ONE!!!!

madboysnmummy

14-04-2009, 16:25

gosh has that been that long since I posted, yep all the swallow proved was that he had severe reflux, but at least it ruled out any other isssues. I just couldnt believe the amount of vomiting. At least he is no longer purging and vomiting from the deep belly its just puddles of reflux. We still get sore throats and you can hear the reflux while he sleeps, but I finally feel like Im one step ahead. My paedi Dr smiley has been so helpful I think he saved me from a nervous break down!! I have notice alot of reluxing with my ds3 who is nearly 3 he cant laugh too much or he pukes and gets big painful hickups and has been bending over and losing mouthfuls. What age does this go away for the mums with older kids???? I thought this would all be gone by now.

madboysnmummy

14-04-2009, 16:27

We have had a shocking 2 weeks. Relux as per usual :rolleyes: but also teething and then gastro! Fun times! It's hard enough getting DD to drink anything without additional problems!

SNAP!! It must be doing the rounds of adelaide we are doing the same teething and gastro. I got it for 10 days! must be in the water haha!

Pregnor

14-04-2009, 16:44

:wave: Everyone

Just thought I'd pop in and say hi! I *think* we have finally got our little refluxer some relief. We put him on 1 feed a day of formula, and he was much more settled. Then went to Ngala, where DS and I both picked up a cold, his turned into bronchitis :rolleyes: But he is pretty much over that. After coming home from Ngala we decided that we would put him onto formula full time. And as reallytee said, S26 AR is NO GOOD for refluxers, we was getting constipated, then really watery poo after, and chucking old formula after 3 or 4 hours. So I did some research into other formulas and hes now on the Karicare HA AR pretty much full time now and is SO much better (plus hes on Nexium 5mg once a day)! Doesnt chuck anywhere near as much, still little bits.. some days worse than others. He is sleeping like a little champion, self settling without too much trouble (wakes once or twice a night for feeds). We are having some bum troubles, he has been straining and doing plasticine poos, so we are trying to get a bit of extra water in him, and the CHN said to give him some watered down pear juice, so after a few explosions I am hoping all that will settle down.

He is such a happy settled little baby at the moment. :cloud9:

I hope all of you find something that works soon :hugs:

ejs

18-04-2009, 10:03

Hi guys,

It has been ages since I did a post, we have just moved interstate and have not had time to get on the hub.
Finally we have had success with DD! After months of not eating and then getting so bad she was losing weight......She has been on proper Losec suspension from a really good compounding pharmacy where we used to live (and they do mail orders YAY!) and Karicare Lactose Free formula. Totally new baby would never know we ever had problems! Drinks all her bottles and eats all her solids. Unbelievable!
Hope you guys are going ok......thought it was about time I checked in again

LeeJ

21-04-2009, 20:49

wow girls, by ds is almost 4 weeks old.
when in hospy, breastfeeding didnt work, and he screamed because he was getting no milk, then on day 5, we come home, by day 10 we went to emergency at 4am saying we dont understand, he is screaming and screaming and screaming, not feeding, down to 20 mls, and throwing it all back up.
midwife managed to calm him by 5.30 and we came home, with her saying see a doc re reflux. so it was 2 days till we could see doc, so in desperation, i got the s26 AR, and tried him on that, which within 24 hours, had shown improvement, power spews were not so powerful, ect.
so we saw doc, he prescribes zantac, and an ultrasound to check his tummy. u/s all clear, so reflux.
zantac is u/a at chemist for a day, so its been 3 days on s26 AR, things are improveing, but poor little thing is constipated to the max, screaming trying to pass stools.
so we dont put him on zantac, as his syptoms were better.
change him to karicare HA AR, starts pooing properly again, and taking the feeds properly. still spews a little, but the screaming has subsided and he is starting to sleep.

we are also seeing chiro as of last week.

i honestly had the same thughts as some of the PP's have said, resentful towards him, crying contantly, thinking, was this the biggest mistake of my life, no one told me i would hate this so much, then he started turning round, and i felt like the worst mother in the world, he was only doing what he knew, and i resented him for it.

i feel like i can actually cuddle him now without all of that resentment.

honestly, i couldnt explain how it felt to go through it, i just hope he stays settled.

:hugs: to you all.

livgoesagain

21-04-2009, 22:09

Hi Everyone, I've just been reading through your thread and hope you don't mind if I join in.

DD is 7.5 months old and has silent reflux and was also a severely colicky baby. She was a 5 week prem baby and didn't start attaching to my breast til she was 4 weeks old so she's had formula for comp feeds since birth and now pretty much has formula except for one breastfeed in the morning.

Just as I think we're getting over things, the reflux kicks in and starts to cause grief all over again. I keep willing myself to keep going, but days like today just get the better of me and I feel like I've got nobody to talk to that understands.

DD was diagnosed with reflux at about 6 weeks. She was also diagnosed with colic by her paed (and a minor congenital heart defect as well as if things weren't hard enough to deal with). The reflux and the colic have made her the grumpiest baby and I really to this day don't understand how I kept my sanity during the first four months til at least the colic subsided. I hated letting her cry too much for fear it would put too much strain on her poor little heart (she has a pulmonary stenosis which means that the right side of her heart may be working harder to push blood through the too narrow pulmonary valve.) This may be irrational thinking, but I guess you guys would know, when you have a baby that cries all the time, it's hard to think rationally.

We've done the Zantac path with no luck. Losec seems to be okay at 10mg per day. I found that it was more difficult to get her to take the suspension that we were getting from the RCH so I've been dissolving the tablets in water and giving them to her that way.

We've tried Pepti Jnr which just seemed to make her bowels worse. Neocate seemed to have some effect on her tummy, but her bowels again became really bad and she starting crying because of that. We've stayed on the Nan HA and it seems to be the only normal formula she can tolerate.

About a month ago, we all got gastro and since then DD has still been doing extremely mucousy diarrhoea 5-7 times a day. Her bowels have started to settle a little after our gp recommended we try lactose free formula for a week or so to give her bowels time to recuperate, but she still seems to have mucous more consistently now than before she was sick. We are seeing our paed next month so it may mean trying to pinpoint some sort of intolerance.

Unlike many of you, we've been fortunate that she's generally been a good night sleeper (probably because she's been so exhausted from crying all day). And prior to the Losec beginning to work, she was catnapping a lot during the day. I believe that it's because I was getting enough sleep at night that I've been able to cope (since she had gastro she's been waking because she was pooing in the middle of the night, and now I think waking has become a habit).

Today something seems to have set her tummy off again, and after 2pm wouldn't sleep at all. I couldn't put her down, she didn't really want to play and she's teething so the only thing that keeps her happy is chewing on my hand. The toys and rusks just don't cut it. I'm really careful about what I feed her, but still it happens.

Anyway, thank-you for letting me ramble on. I'm really tired and short tempered. I feel terrible for my beautiful DS who is 4 y.o. and tries so hard to be helpful. I'm in a cranky mood so often and I really hate that. It's nice to be in the company of people who understand the difficulty of a reflux baby. So many people thought we were just exaggerating the behaviour of a infant until they spent a little time with her and realised how difficult she could become in such a short period of time.

Does anyone else have trouble with car trips? I've felt so isolated because DD hates being in the car. Only lately have we been able to go out a bit more without her screaming her head off.

Anyway, hats off to you all in coping with your poor little ones.

jess_live_die

21-04-2009, 22:13

can i join 2 my son has reflux and colic of the bowls

gizmoduckus

21-04-2009, 22:34

Wow! It seems like we all had bad days today. :hugs:

I ended up on the floor of his bedroom today and just cried as much as him. It is all too hard to cope with sometimes. :(

madboysnmummy

21-04-2009, 22:48

yep and only we get it! you dont even have to go into detail its just plain torture at times and no words can match how you feel. you have a good week followed by the week from hell!

Im sure teething doesnt help either. the past few nights ds seems so congested and gaspy Im tired cos i worry hes going to stop breathing. Does anyone else fear this? there is so much congestion and mucous in the oesophagus and nasal passage, but never amounts to a cold or anything.

anyways Im too tired and rambling and not making sense...... havent been able to put bub down much today

fingers crosed tomorrow is better for us all x

Elladeja

03-05-2009, 22:02

hey there, just wanted to introduce myself. Im Elle, a first time Mum of a beaituful baby boy who will be seven weeks old tomorrow.

Since birth, my little guy has been the most unhappy little person, he refused the breast immediately from birth... I remember the screaming started the the two days I was in hospital... as a new mum I just assumed this was normal and was looking forward to getting home. But here we are 7 weeks later and the constant crying and screaming continues.

He continued to refuse the breast by screaming, scratching and crying as if we were forcing him to do something awful ... after seeing the lactation consultant someone mentioned Reflux ... so off to a GP we went who confirmed it was most likely silent reflux. All the signs were there, screaming, back arching etc ...

But it seems to be more than just reflux ... I know Im a first time Mum ... but to me his behavour seems to be so extreme ... I cant stand seeing him so unhappy. He has brief (I mean .. only seconds) where he looks semi calm ... but even his facial expression when he isnt crying is pained and unhappy Its like we cannot console him. I have mentioned this to the GP's etc who just tell me 'babies cry' ... 'its colic' ... 'it will pass'. He's never settled though, even when he actually sleeps his grizzling, grunting and squirming ..

We havent even had a 'real' smile yet .... I just need to know he will be a happy baby sometime soon.

The constant screaming and trying to find answers is exhausting. I have a really supportive partner, and sometimes among the craziness we just have to laugh ... but sometimes I get teary at all this ... but we'll do whatever it takes for our little guy.

I'm interested to hear from anyone experiencing the same ... or who came through this ...

Elle :)

threeofthem

03-05-2009, 22:29

Hi, you poor thing I know what it is like, my ds2 (and probably ds1) has silent reflux. I took ds2 to a pead at 6 weeks and he was put on prescription formula and zantac. It took a couple of weeks to get the breast milk out of his system but since then he has been a different kid, not as much arching his back, less puking and wind and much more settled.
It might be worth taking your bub to a pead to get him checked out, because sometimes its not just colic. You need to trust your instincts. If you feel there is more to his pain then see someone who will listen to you.
As a mother we have to fight for our children.
Hope you get your bub settled soon. Take care and take breaks from the crying if you can.

gizmoduckus

03-05-2009, 22:37

Hi Elle

Reflux can sometimes be really extreme. A lot of people think that reflux isn't that bad but trust me it is.

Did your GP actually give you anything to help with the reflux? Sometimes you have to try a variety of things before you find out what is right for your child.

It didn't take us to long to find what worked for our DS but I had an extreme amount of support from his pediatrician.

I understand when you say that you have an unhappy baby. DS was much the same. I have to say that even though DS isn't perfect and the reflux still flares up, he is so much better than he was before. Now he smiles and giggles more times than he is screaming which is such a relief.

:hugs: I hope you work it out soon.

BernieL

04-05-2009, 18:22

Hi, I am also new on here and found the thread whilst looking up reflux. It is good to hear other peoples stories and feel less alone. I have a 6 month old with reflux. ( I also have a three year old who had similar symptoms but he was better by 7 months)

My little man was fine until 10 days then overnight everything changed. He became clingy and whingy and wouldn't sleep.

Now five months on we are still trying to find the answer. He has tried zantac which gave him stomach pains, Losec which caused constipation for 6/7 days at a time and zoton. The last one seemed to work for a few days then things got worse than ever. That is where we are now, contemplating where to go next.

He is still catnapping during the day but now doesn't sleep at night at all. I put him to bed three or four times, each time after 5 minutes he is up again. He then sleeps for maybe an hour, then we start all over again. He continues to wake every hour all night. He won't take a proper feed and wants small feeds at half hour intervals. I spend all of my time getting him to sleep or trying to hold him off feeding.

Poor little man is so tired, and I am barely functioning now through lack of sleep. Unfortunately I have also found people either do not understand and think it is just a sicky baby, or think he is just naughty and playing me for cuddles and attention. I would love to hear anyones ideas as I only have a few left. We are investigating food intolerance and I guess try another medication.
Wishing you all some sleep and an improvement soon.

madboysnmummy

05-05-2009, 18:30

elladeja - you will find a paediatrition a huge help can you get a referal to see one?

My 2nd bub is like yours he just screamed and cried for the first 4 and a half months of his life he hardly rested at all and if he did we rested him on his tummy. He cried so much my 2 and a half year old was constantly saying he is crying.. my bub was vomiting as well so it wasnt silent but he had the colic with it which is quite distressing.

Thank god his colic went at 4 months it switched of over night all most and sanity returned to the house.

big hugs to you guys going through a rough time and with unnsettled babies.

I just cant believe my bub is already nearly 6 months! how we got here with out a break down I dont know. Oh and Yay for solids in a reflux bub. we are learning about what is ok and what keeps us up all hours of the night at the moment..

Nowhere

05-05-2009, 18:45

hey reflux mums thought i would pop in and say hi

Sory to see there are so many refluxers on here as we all know reflux is a horible disease, i wish no babies had it but unfortunately many do :no:

Well my little refluxer isnt doing wel at all in the GI sense of late, she is now 3 years and one month and still 100 percent tube fed into her bowel and stil has a gastric drain dispite the drain and a fundo we are stil dealing with puke only difernce from the normal reflux is this is just bile and tummy acid no feeds in it. We have had issues getting DDs formula of late so she is on neocate again which she doesnt tolerate to well, So she is back to 8.2 kilos ( gota weight again tonight likely less GRRR) she is loosing weight like crazy, We are hopeing to get her feed issue sorted this well

So over reflux thought after 3 years it would be a thing of the past