I don't know what to do?

[ManekiNeko]

I have had two children with reflux and intolerance that caused it. The second child so severe we ended up in hospital and at 2 he still has a restricted diet and is on elemental formula. I thought it would be different this time I really did because I am breast feeding and I don't eat any of the foods my other children reacted to. Well 3 weeks in with number 3 and he has reflux too. I am on day 2 of losec but I honestly don't know if it's going to work because reflux medication alone didn't work on the last two and the only thing that helped the second was elemental formula.

I feel like I am between a rock and a hard place though because while breastfeeding is taking it's toll on me physically it's also mentally draining me, it's my only option. I have not showered in a couple of days, my house is a mess, my 2 year old and 4 year old are either fighting, running amok or destroying something all while I can't move with a baby attached to me. I have seriously put him down for one hour today that's it and I don't have time for my other children. I have tried every position to try and get him to nurse better and I cut out gluten/dairy/soy/egg. The only thing that stops the crying is to feed him but he is now refusing the breast and he won't take a dummy. I can't just give him formula it's not an option.

Look I don't even know if any of this makes sense to whoever is reading but I don't know what to do. My DP is an idiot has no idea how to make the baby stop crying (even though my mum can) and he ends up waking up or screaming the moment I hand him to him. He also works long hours so he can't help me with the other two and frankly he's crap with them too. Today he was telling me that there is no reason to be mad at him as I knew he would be late... Yes because he was getting tattooed and he couldn't understand why that p!ssed me off. On his days off he complains of having to do anything that isn't riding his bike or some leisure activity, while I can't even have a freaking shower.

I just feel drained and I have no idea what to do if the losec doesn't work.

[amiee]

i couldnt read without sending some :hugs::hugs::hugs:

is your mum close by, could she maybe come over tomorrow and help you out.

when the two older kids are in bed can your partner just hold the bub for 20mins while you have a shower.

i hope you get some sleep tonight and tomorrows a better day

[ManekiNeko]

Thanks at least I am getting sleep as he co sleeps with me and that's probably the easiest part of the day. My mum just had a cataract cut out plus she isn't in the greatest health so i can't rely on her. I was so desperate yesterday I drove to her house and she thankfully nursed the baby asleep for a while enough that I could eat and watch my toddler. I hate giving the baby to DP and have him either wake up or scream the whole time.

[aLittleLoopy]

:hugs:
Have you got a sling? You can try breastfeeding the baby in the sling too.

Also my GP suggested for reflux going off all cow products, so that included beef. Just make sure you're getting enough iron!

[Mrs Nietzsche]

if you could wave a magic wand, what do you think would help?

ie - yuor other kids - could they go to daycare for a bit?
- could you get a cleaner for a few weeks
- could you go to a friend's and leave hte house and kids to your partner (too bad if he cant cope)

Can I help in any way?

[amiee]

could you maybe run a bath and have a bath with bub, it might make you feel a bit better. i know when i have a shower it always makes me feel a bit more human.

is there anyone else that can come and help, what about dp family

[MamaKoala]

I'm thread crashing as I don't have any experience with allergies but I just wanted to say that I am close by if you ever need a shower. I know how hard it is with three kids and not having much support so please call me, even if it's just to take your kids outside to distract them so you can have some quiet. I have good baby holding arms too so you can take a shower :hugs:

[ManekiNeko]

The kids already are in care 2 days a week which already makes me feel guilty especially when DS now cries when I drop him off. House being a mess doesn't bother me too much. The thing that I really feel like is upsetting me and made me loose it today is the thought that breast feeding may not work. I really really thought that this time it would work. I really don't want to have to formula feed another child it's like a dagger in my heart.

You knowI could accept it with the last two and I didn't get so worked up but I wanted it so much this time and I don't want anyone to take it away from me. My nipples feel like they have razor blades in them because his erratic feeding is effecting my supply and causing blocked ducts. My other children are suffering but I feel like if losec doesn't work it's going to break my heart to ff.It's making my cry now thinking it may not work and I never cry.

[Mrs Nietzsche]

I don't know if this is any help but I often just take a shower *with* the baby. I have managed to work out how to brush teeth, soap up, wash face etc with her but at the least you could just stand under the water and rinse off. It is better than nothing esp in this muggy weather.

Is it reflux or allergies? I thought they were different?? If it's reflux.. I have no experience but I have read that the constant feeding can get into a bad cycle as the feeding soothes the reflux pain but then the comes back up causing pain, etc etc. Really hoping the losec works for you.

Very new babies do just feed all day of course.

Is he sleeping at all?

[ManekiNeko]

Thanks MK that means a lot.

That's the thing the constant feeding is like a vicious cycle. He's not really gaining wait I assume he just likes foremilk because it washes down the acid but then when it's just hind milk he gets fussy because it isn't giving the same relief then creating an imbalance with my milk. I am praying the losec works and his feeding sorts it's self out. The other thing is he could have true lactose intolerance which would mean elemental formula and i really really don't want that to be the case.

[MamaKoala]

:hugs: It must be a horrible experience to feel like something you worked so hard for isn't working. Have you had a read of Kellymom website? They might have some info on reflux and breastfeeding. Also Ask Dr Sears is a really good website too. There is also a site called ibreastfed which has stories of people overcoming a lot of problems to nurse their babies. There might be something there for you to give you hope.
No matter what, you need to do what's best for your family. I am very pro breastfeeding as you know but where it interferes with your mental health I would always say do what you can and then look for an alternative. Maybe give yourself a time frame. Say if in 2 weeks things haven't settled then you'll explore your options and see how you feel in 2 weeks. If you feel you can go another 2 weeks, then set that as your new guide. Could you maybe use nipple shields while you're in so much pain? I currently have nipple thrush and it is agony to feed DD but she only feeds 3 times a day now. It must be horrible to feel so much pain while you're trying to do what's best for babe.
Tomorrow I'll do a bit of googling for you and see if I can find anything that might help you continue BF your little one.

[ManekiNeko]

Oh and yes he is sleeping a fair bit but only because I hold him constantly. I was able to do things one handed before the reflux kicked in but now the sightest movement wakes him up and well that's no good because he wants to go straight on the boob. I have to try my best to keep him asleep as long as possible to keep him of the boob for long stretches.

[ManekiNeko]

The pain doesn't bother me it's more so that my other children are being over looked. If he was my only child it would be fine I could handle it.

[MamaKoala]

Found one. It's not quite the same but it's about the formula you're talking about.
http://ibreastfed.com/2008/07/breastfeeding-my-allergic-baby-marys-story

[MamaKoala]

DD was a constant feeder when she was new too. Although she didn't have reflux she barely slept (until about 13 months) and would feed all day every day. I had the boys in school so it was a little easier but trying to give them any attention was really hard. I know yours are young so they wont understand as well as mine but something will change. Whether it's you switching to the formula or bub settling down, it wont last forever. It's more about micromanaging at this stage. If you need to give DS1 a bit of attention then see if you can do it in shorter bursts. If he needs something from you its ok for bub to be 'burped' for a minute while you do it.
I'm so sorry this is so hard for you and that your partner isn't understanding what is happening.
I hope that you can give it a few more weeks to see how things go and then make a decision whether to continue or stop.
Don't feel guilty about getting as much help as you need right now. It is temporary and you will have time to make it up to the older ones once this stage is over.

[ManekiNeko]

Thanks mk I just am annoyed things aren't working out how I imagined them and it's hard tto accept that's just life and sometimes we don't always get what we want.

[MamaKoala]

Don't give up just yet. Here's another link for you (scroll halfway down because I'm sure you know what GER is by now) http://www.askdrsears.com/html/10/T106004.asp

[ManekiNeko]

Thanks mk i think I was reading that last link yesterday. He's been asleep for the past hour managed to get DP to hold him while I showered and I feel much better. I think I needed a release so I can pull it together. I birthed a double footling, posterior breech at home in 4 hours without even so much as a whimper... I have to get in the mind frame that I can do this to. I thought it would be the easy part but I guess I should prepare myself for a tough journey.

[Lateralus]

Hi MN... Sounds really tough :( I am on my phone so can't see where you are.. DD had a lot of sensitivities when I was BF her and we saw a brillient LC in Brissy who specialized in allergies.. She was a bit alternative, but helped us to no end!

Also, if you are determined to give your LO breastmilk but he just isn't accepting the breast.. You COuLD consider expressing and feeding it to him with a thickening agent.. Thicker feeds are great for reflux babies.. And maybe you could get him
Back on the boob when the reflux settles down in the months to come?! Just food for thought! Good luck x

[ManekiNeko]

I am no good at expressing I can't get much out at all. Who was your lc?

[earlgrey]

have you tried a chiro or cranio sacral therapist? My reflux dd improved greatly after me cutting out dairy and her seeing a chiro.

[amiee]

i am so glad you got to have a quick shower. you are doing an amazing job and your kids are very lucky to have such a kind and caring mum.

what have you tried expressing with? if you see a lc they normally hire out electic ones that do both breast at the same time, its much more quicker than using the manual pumps or hand expressing.

i am not sure how old your other kids are but could you sit on the floor near their toys while they play, and feed your buuba on the floor so you are right next to them and play counting games, singing etc or set some playdough up at the table and feed at the table

[ManekiNeko]

I just don't have the strongest supply I have a medela double electric and after my son has been on I can not express anything even when there is clearly still a little milk when I hand express. With my last I expressed 3 hourly and was on medication to boost supply and all I could get the whole day was about 200ml and that was without having my son on. I don't even wear breast pads because I never leak.

My 4 year old is not too bad and it wasn't as hard dealing with her at the same age as my DS1 when he had reflux and was the second born. My DS1 though is the kind of boy who needs to be preoccupied all the time or that's when problems start. He can't just sit and play quietly which I understand because he really is just a baby himself.

Yesterday evening I lost it because he threw all the bath toys and water out of the bath like he does every night so because I was so stressed I yelled at him and stuck him in his cot and walked out and closed the door and I never yell at him After about 10 minutes of screaming I came back and his nose was bleeding and i felt like a jerk but I had the other baby in my arms so couldn't really do much except tell him to sit and watch tv and not move other wise I would have to put him back. We have another lounge room and when I sit in the other one with the baby unable to move DS1 an DD run around crazy in their jumping off the lounge and yesterday he almost fell head first onto the tiles. I just don't know what is going to happen because I can't watch them.

I told DP they ate bread for lunch and he was like you can't just give them bread at least put something on it. I said how I cna't move or put the baby down without him waking and screaming and plus the kids pull everything off their bread and throw it on the floor anyway. He then asked me why they do that. FFS they are toddlers? Sheeze it's like he just doesn't get it.

[ManekiNeko]

When I get a chance will try some osteo... In 2 and a half weeks I am supposed to start intensive therapy with speech for my 4 year old who is autistic i'm not even sure How I will handle that as I have to drive over the other side of town for that.

[beebs]

Do you mind me asking which intolerances caused reflux in your kids? And how did you find out? DS2 has issues similar - just had an endo which confirmed GERD, ulcers in the esophagus, dudeonitis and gastritis and have just gone gluten free to see if it works as there is coeliac in the family and he has suspious results but not diagnostic ones - arrghhh!!

Sounds like you are having a rough trot - you have 3 kids under school age - has anyone ever talked to you about inhome care? Its organised through your early childhood centre and funded by centrelink and you need to meet certain criteria to qualify - its basically where a early childhood worker comes to the house for a set number of hours a week to help out. They don't generally do housework but it depends who you get, and they can take the other two out while you focus on your new one or look after all three if you need to have a break. I had it when I had the twins and had 70 hours a week. It was a big help. Specially cause DS2 was in such pain.

[ManekiNeko]

My paed ran a test for alpha-1 antitrypsin on my son's stools which were mucous and had a strong fowl odour. High levels of a1a indicate a problem with digestion. My son's levels were 12 times the acceptable amount. About a week after he was put on elemental formula he started vomiting brown milk so it was was just luck we got him onto the formula in time if not I don't know what would have happened. As he was only on soy formula it was easy to figure out what he wasn't able to digest and he had same symptoms on cow's milk formula. I went to a public paed who told me it was just reflux start solids at 4 months so glad I ignored him otherwise I wouldn't have known what was causing it.

I could always tell by his poo if he was reacting to something and we have had issues with dairy/soy/egg/potato/oat milk and on rare occasions gluten. At 2 it only seems to be the soy/dairy and egg now but then if he eats too much bread he reacts again so we limit him. His Dad has similar issues and because of the reactions being hit and miss sometime's I am suspecting it could be chron's disease in both his Dad and him. I have been pushing his dad to get tested so we can get more answers because as well as the loose stools he's been admitted to hospital for colitis at 11 months after drinking oat milk. He be\led for 3 weeks and lost about a kilo. He also would get hives recently too. I was so angry at DP last night I told him it was his fault all 3 kids were sick because I don't have any food problems lol :o.

Thanks for telling me about the in home care I will look into it. Not sure how it would work wit DD as she has a one on one carer at kindy as she is autistic.

[beebs]

My paed ran a test for alpha-1 antitrypsin on my son's stools which were mucous and had a strong fowl odour. High levels of a1a indicate a problem with digestion. My son's levels were 12 times the acceptable amount. About a week after he was put on elemental formula he started vomiting brown milk so it was was just luck we got him onto the formula in time if not I don't know what would have happened. As he was only on soy formula it was easy to figure out what he wasn't able to digest and he had same symptoms on cow's milk formula. I went to a public paed who told me it was just reflux start solids at 4 months so glad I ignored him otherwise I wouldn't have known what was causing it.

I could always tell by his poo if he was reacting to something and we have had issues with dairy/soy/egg/potato/oat milk and on rare occasions gluten. At 2 it only seems to be the soy/dairy and egg now but then if he eats too much bread he reacts again so we limit him. His Dad has similar issues and because of the reactions being hit and miss sometime's I am suspecting it could be chron's disease in both his Dad and him. I have been pushing his dad to get tested so we can get more answers because as well as the loose stools he's been admitted to hospital for colitis at 11 months after drinking oat milk. He be\led for 3 weeks and lost about a kilo. He also would get hives recently too. I was so angry at DP last night I told him it was his fault all 3 kids were sick because I don't have any food problems lol :o.

Thanks for telling me about the in home care I will look into it. Not sure how it would work wit DD as she has a one on one carer at kindy as she is autistic.

Holy cow. Crohn's has been mentioned to us a few times - but to be honest I am crossing my fingers its coeliac (my mother is coeliac and I am suspected coeliac) - so they'll never eat a crossaint again- big deal!

They also supsected Cystic fybrosis - he came back elastase deficient in a stool sample and we were given a 90% chance of cystic..thankfully it wasn't - very stressful time.

Any chance it could be coeliac in your hubby and son? Has hubby had the coeliac blood panel - Crohn's and coeliac can mimic each other - and it can start at any age.

Foul, mucus, fatty, pale stools are what my two kids have - so disgusto!

[~CupCakes~]

ohhhhh T, i have no advice on the allergy side of things but i am great at distracting kiddies :) and have excellent baby holding arms:D ( i don't even mind if he cries i wouldn't take it personally:p )

im alos pretty good with a vacum!!!! any help you need please just ask...........xxxx :hugs:

[ManekiNeko]

He had another bout of colitis about 6 months ago after eating a wheat biscuit so was screened for celiac but it came up negative in his bloods. They said they can't be sure if he is or isn't and we thought that he and his Dad may have been but then sometimes both can eat wheat with no ill effect other times both of them have terrible diarrhoea so with all the other symptoms crohn's may be a possibility. I've been told if he has such issues now as a toddler it may be even worse as he grows. Like you I really hope it isn't.

[ManekiNeko]

ohhhhh T, i have no advice on the allergy side of things but i am great at distracting kiddies :) and have excellent baby holding arms:D ( i don't even mind if he cries i wouldn't take it personally:p )

im alos pretty good with a vacum!!!! any help you need please just ask...........xxxx :hugs:

Well you guys are still welcome over on Tuesday as long as you don't care that I smell and look like the crazy cat woman and my house is a mess lol.

[~CupCakes~]

Well you guys are still welcome over on Tuesday as long as you don't care that I smell and look like the crazy cat woman and my house is a mess lol.

I wouldn't care a bit :D

[beebs]

He had another bout of colitis about 6 months ago after eating a wheat biscuit so was screened for celiac but it came up negative in his bloods. They said they can't be sure if he is or isn't and we thought that he and his Dad may have been but then sometimes both can eat wheat with no ill effect other times both of them have terrible diarrhoea so with all the other symptoms crohn's may be a possibility. I've been told if he has such issues now as a toddler it may be even worse as he grows. Like you I really hope it isn't.

Coeliac testing has a 40% false negative rate in children under 4 and 15% in adults, it seriously is so unreliable. Also - Coeliac is very complex with over 300 associated symptoms - some people have none, and some have many. Also - you go through periods of seeming really well and then periods of not so well - although some people never feel unwell. Only 20% of coeliacs are diagnosed in Australia - they estimate there the other 80% are wandering around eating gluten and damaging themselves without ever realising it! My mother was 65 when she was finally diagnosed and had gut issues her whole life.

I would be doing a bit of reading about it maybe - also are there any other autoimmune diseases in your or DHs family? There seems to be connections with Coeliac and other things like type 1 diabetes and Rheumatoid arthritis among many others.

Here is a good website to have a look at

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

[shinebrite]

Coeliac testing has a 40% false negative rate in children under 4 and 15% in adults, it seriously is so unreliable. Also - Coeliac is very complex with over 300 associated symptoms - some people have none, and some have many. Also - you go through periods of seeming really well and then periods of not so well - although some people never feel unwell. Only 20% of coeliacs are diagnosed in Australia - they estimate there the other 80% are wandering around eating gluten and damaging themselves without ever realising it! My mother was 65 when she was finally diagnosed and had gut issues her whole life.

I would be doing a bit of reading about it maybe - also are there any other autoimmune diseases in your or DHs family? There seems to be connections with Coeliac and other things like type 1 diabetes and Rheumatoid arthritis among many others.

Here is a good website to have a look at

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

My husband is one of those 15% so we tell ppl he is an undiagnosed celiac who 'chooses' to not eat gluten as he has severe adverse effects incl loosing weight, not being able to put it on his WHOLE life, bleeding instead of bowel movements several times a day, mucus in bowel movements, severe stomach cramps. We were told after seeing ED several times, gastro guy and GP to just live with it. Poor guy. He's never been perfect with a totally grain free and low fructose diet (no pears, apple or sugar) skinny but REALLY healthy! Our daughter is showing signs thru several sloppy bowel movements during the day and I've heard if a daughter can b diagnosed then it can prove he has it. They rarely eat wheat now as I just can't afford the different diets as I'm gluten and dairy intolerant anyway. But we'll buy them gluten treats sometimes so...

Just thought I'd say hugs to the OP, must be terrible what you've been thru xxx

[ManekiNeko]

I know it's kind of irrational and not fair but there was a while I kept being angry at DP for having problems because the kids did... Silly I know. His Grandfather was celiac and his sister thought she was (perhaps she's having as good spell she doesn't think she is now.) So that's why we thought they could be. I mean surely not being able to make it to the toilet would push one to find out what's up but not DP. Other tests I feel are far too invasive for a 2 year old which is why I want DP to find out.

DD has had loose stools but never any of the problems to the extent DS1 has them. She is also Autistic and has reacted to vaccines. I know there is a possible link o gut issues and autism and we both have a strong family background of autistic type behaviour (i think there are a few undiagnosed family members.) I had this dream I would get one child who had perfect health and I guess it feels like that's not going to happen. With all that has happened I almost want to ask them to tie my tubes and I am only 26. I still worry if my younger two are going to be autistic as well as the eating issues.

I started taking some dairy free inner health plus and will be restricting my diet even further. I fear if I don't preserver with breastfeeding DS2 could end up with worse gut issues.

[DairyfreeDiva]

Couldn't not post... I know how hard it is. When I bf my ds I had to cut out dairy, soy, egg, wheat, preservatives and gluten for 11 months then with dd it was dairy and soy free for 5 months. It was really hard. I don't have a solution sorry... Just wanted to lend my support..xxx:hugs:

[beebs]

Oh - the fact that you have Ceoliac in the family I'd deffo be assuming that first. DS2 had an endoscopy at 17 months - I was so scared about it - but it was such a non event in the end - he was up and playing 5 mins after the general wore off. But I understand why you would't want to go there just yet. Deffo something to keep in mind.

[GabberQueeN83]

Where are you? i don't mind helping even if it's just for an hour :)

[ManekiNeko]

Where are you? i don't mind helping even if it's just for an hour :)

Thank you that's lovely but it's a bit far away.

I assumed that at first but then the other symptoms and the sometimes effects other times not and the fact that it isn't just wheat make me think it's something else. I have heard a lot of people with crohn's get misdiagnosed with coeliac.

[Freya]

Oh my god love :( I wish there was something I could do. Malakai was very similar as a newborn but he just had bad wind issues. I can't believe that this happening after the many sacrifices you made to better your chances of feeding. I don't have any advice just lots of support. If there is anything I can do to help out please let me know xx


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[ManekiNeko]

Oh my god love :( I wish there was something I could do. Malakai was very similar as a newborn but he just had bad wind issues. I can't believe that this happening after the many sacrifices you made to better your chances of feeding. I don't have any advice just lots of support. If there is anything I can do to help out please let me know xx


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Thanks hun things seem to be improving on the losec although I don't want to get my hopes up thinking we are out of the woods yet.

[wild at heart]

have you rang ABA? even just to have a cry??

or do you have a healthline you can call just to vent a bit?

[ManekiNeko]

It appears out of all the things I removed from my diet my milk still is upsetting DS2 so I've decided to switch full time to formula because bar growing my own veggies in my backyard and living off them I don't know what else to do but this. Thank you for all your kind words and advice.

[DairyfreeDiva]

It appears out of all the things I removed from my diet my milk still is upsetting DS2 so I've decided to switch full time to formula because bar growing my own veggies in my backyard and living off them I don't know what else to do but this. Thank you for all your kind words and advice.

You gave it a great shot... Good on you!! I know how hard it is and I also was forced into the same decision. Good luck and hope prescription formula solves the problems. Xxx

[earlgrey]

a special formula? Cos regular formula is full of allergens?
My daughter is allergic to six of the nine main allergens and I have fed her for coming up to 3 years without a problem, by avoiding those foods myself. I know how hard it is. Good on you for trying :)

[MamaKoala]

:hugs: