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View Full Version : Advice please... reflux, dairy intolerance, losec, neocate



Polimi
08-09-2008, 14:37
I need some advice from all you experienced reflux mums out there... please! Apologies in advance for a long post and lots of questions, but am at a real low point and need some help!!

My bub (20 weeks old) has been suffering with reflux pretty much from birth. He's never been as bad as some of the babies talked about on here... but he's been bad enough to bring me to tears and pleading with him to stop crying most days, to make his father virtually hate him, to make his 3-year old sister feel that Mummy doesn't have any time for her any more... etc etc... I think you get the picture?!

Initially, at around 3 weeks, we thought bub was a 'happy chucker'... he vomited loads but didn't seem to be in pain. He did cry quite a lot though... but we just thought it was typical newborn baby crying (my first child was quite a crier for her first 3 months). We tried thickening his feeds, which reduced the amount of vomit slightly - but not a lot. I also took him to a chiropractor for 4 sessions - which didn't seem to make much difference. He then seemed to be getting in increasing pain (screaming after feeds, often bunching up his legs and arching his back), so he got put on Zantac at around 6 weeks. I'd also changed formulas a couple of times (he was then on Karicare HA-AR) and done all the other stuff advised for reflux babies, like keeping him upright after feeds, elevating his bed, etc. None of this seemed really to help him (still crying lots and looked in pain), so went to paed, who put him on to Losec 20mg a day, in tablet form) instead (at around 8 weeks). This seemed to help a bit - but he still was a really whingey baby, crying much of the day and needing to be held/jiggled most of the time. Still vomiting loads too. I also tried yet another formula - Bellamy's organic + Karicare thickener. So went back to paed (who'd said that if the Losec didn't work, then it wasn't reflux that was the problem!) who then suggested we try putting him on to Neocate formula (although he didn't specifically say that he thought bub was dairy intolerant) as well as the Losec. He also told me to stop using the thickener with his formula. We've been on this combination now for about 5 weeks and I still really don't think we've got to the bottom of his problems. What's difficult to know though is how much of bub's crying is due to reflux/another problem and how much is just his temperament (most 2nd babies I know tend to be more laid back and 'easy'!!). One of things that we've never had any problems with is his feeding and weight gain - he guzzles down 6 bottles a day (180ml) and is a whopping 8.5 kg! Am back to paed this Friday, but need some advice as to how hard I should push for further investigations. Here are some of the things I'm unsure about or would be interested in hearing comparative stories...

Bub's behaviour - As I've said, I know he's not as bad as some babies, as we don't have any major sleep problems. He sleeps pretty well at night and normally has 3 or 4 naps a day (some only 20mins or so, but sometimes he'll do up to 1.5 hours). But he is REALLY clingy and whingy all the time he's awake - he generally won't sit or lie on his own for more than about 10 mins before crying (even if I'm right next to him). Even being held sitting down sometimes doesn't calm him - he has to be held and walked around/jiggled or taken for a ride in the car. Going out in his stroller doesn't usually stop the crying. He's actually best when we're out and about with lots going on (not sure if it's a distraction from the discomfort, or whether he's just a baby who likes lots of attention/stimulus). Sometimes he really screams for no apparent reason (has had sleep, feed, medicine, nappy change etc) - and it just goes on and on and on! He doesn't really want to 'play' with anything and getting smiles/giggles out of him is hard work! Surely this isn't 'normal' for a nearly 5 month old baby?

The vomiting - This just seems to have got worse and worse (more of it and more often), esp. since we stopped using the thickener. It can happen at any time - during or immediately after a feed, or over 2 hours later! And not just when he's on his back or being moved. On a couple of occasions, when he's done really big vomits, there have even been a couple of tiny spots of blood. Has anyone else had experience of reflux vomiting getting worse before it got better? Will going on to solids help this (paed has said not to do this until 6 months, but I wonder whether to try them sooner)? When will it end (am so tired of smelling of vomit and having to change clothes so many times!)?!

Losec - the paed told me to give this to him, disolved in water in a syringe, at the same time as he is feeding. He said he didn't recommend using the suspension form, as found that it was often ineffective due to the granules not being mixed in the solution every time. Sometimes I get most of the tablet into bub, but sometimes he spits or spews quite a bit of it back out. Could this be why he is sometimes still in pain, or is it more likely that the Losec simply isn't working? Are there alternative meds? I've also seen it said on the forum that Losec is most effective when NOT given with a feed - but how do you get them to swallow it otherwise, as it is so full of granules??

Neocate - since we went on to this (and stopped using the thickener), bub has seemed to get hungrier sooner between feeds. Has anyone else had this? His poos have also changed to a scary dark green colour - is this normal with Neocate? Talking of poos, he often does about 4 a day (all really 'loose' and often with curd-like bits in and lots of mucous. Again, has anyone else found this? I've read that another prescription formula for allergies/intolerances is Elecare - has anyone found this better than Neocate for their bub?

Mucous - bub is always full of mucous (can hear it when he breathes and he coughs quite a bit) and it's often in his vomit as well as his poos. He did have a cold/cough bug for a while (as did the whole family), so initially thought that the mucous was linked to that - but it just doesn't ever go away! Is this typical of reflux babies or could this be a sign of milk protein intolerance? Bub tested negative at the GPs for lactose intolerance, by the way.

Endoscopy - the paed mentioned that an endoscopy would be the next step, if the neocate doesn't help bub. What I'm not sure of is what this could tell us that we don't already know and what further treatment may or may not be necessary afterwards?

Once again, apologies for the long post... but am in need of some advice! We have no family or close friends in Australia, so have really struggled with not having support or anyone to really talk to about all this. Added to which, I am still not 100% right 'down below' after a hideous birth... so things seem pretty grim at the moment!!

Thanks for any views...

MadCatR
08-09-2008, 22:18
Firstly here are lots of :hugs::hugs::hugs::hugs:. I know that you will be needing them.

I wish I could give you some answers, but all I can say is your not alone. My DD is 6 1/2 months now and I still don't know whats going on. She has had many of the things you have described with your DS. We are hopefully heading to another paed on Thursday for a second opinion because I feel like I'm going to lose the plot some days.

Some people say that solids helps, I feel like it is adding more probs at the moment. DD will vomit several times while i'm feeding her, sometimes she keeps wanting to eat and others she'll just go red and start screaming. We are curently giving her thickened Neocate, 10mg Losec the raising up cot and change table, holding up after feeds (not so easy when she wants to grab after everything). The Losec is so hard to give and DD has worked out that she can spit it back out.

I am so over the smell, and there are parts of my house that smell really bad from it staying in the carpet and I don't know where (thankfully its getting ripped up in a month or two). I'm over having wet patches on my crotch when out because she vomitted on me. I'm so over my little girl crying and not being able to fix it, I want her to feel more happiness. Its a good day when we can get one laugh out of her.

Let us know how you go Fri.. I'm still trying to work out what result I want from our paed appoin thurs. I kind of feel like there isn't much they can do, but I would like some more help in coping with how to deal with our curent probs. So like you are unsure what use further investigation while prove.

EsSjAy
08-09-2008, 22:52
Mmmmmm.... a tough one.....
Firstly you mentioned mucous in the poos.... this can be a sign of an intolerance BUT when bubs is going through an illness like a cold etc... they swallow a lot of mucous and you cans see it in their poos.... the curds and loose bowel motions are also a sign of an intolerance/allergy but has this only started since being on Neocate or before hun?....
Neocate is a fantastic formula for bubs who are intolerant or have a milk allergy but it can take a long time for it to repair any intestinal damage and what i mean here is repairing the lining and promoting 'good' enzymes in the digestive system to do their job again.... I know some mums sugest 5-6 weeks before complete healing is achieved. There are cases however where Neocate isn't effective and another formula is trialled.... there maybe a slight chance that something in the neocate is reacting with her also.... the endoscopy will tell you more about what the problem is and better decide on treatment....
Losec is a great anti reflux/acid medication, it is an accumulative drug that can take up to 3 weeks to properly get into the system... If bubs isn't having the full regular dose because of what you described then I'd say this could be the cause of some of the problems.
Losec can be given 20 mins before a feed if this helps. Medication takes 20 mins to absorb into the body so if you can keep it down then feed bubs then this is the success you need to ensure that bubs is getting the dose he needs.
As for temperament.... There is truth to that.... It may have a bearing on how settled or unsettled bubs can be but in saying that a bub who is continually unsettled and crying alot is IMO pained by something.... Reflux babies remember pain and are also very sensitive little things because of it... especially around feeding time as they can associate it with pain... or any other activity that has upset them....
Over stimulation is a big thing too.... Once they are it's very hard to get them to accept sleep more so in the day than at night.... Reflux babies are usually very good sleepers at night and cat nappers during the day.... It;s strange but true.... My paediatrician basically put it as they are so exhausted that they will sleep better at night and also because the digestive system slows down and the tummy reduces in producing acids therefore a much more content bubs....
This made total sense to me...

Sorry for the long post..... I hope it helps somewhat.... Keep your chin up.... you are definitely on the right track with what you are doing now.....

Polimi
11-09-2008, 14:58
Thanks for replies so far. Am guessing most people were put off by the length of my initial post!!

Sciend - what are you using to thicken the neocate? Will be interested to hear what happened at your paed appt today.

Essjay - the mucous in the poos and vomit have been there all along. The poos only changed colour when we move to neocate though. They've always been really soft - even when we were on thickened formula and no meds (when supposedly there is more of a risk of contipation).

Am hoping that the paed will suggest an endoscopy when I see him tomorrow - just feel we need to find out more! Have also been recommended an acupuncturist who specialises in babies/children with various problems, inc. reflux - have an appointment with him for november! Anything's worth a go...

EsSjAy
11-09-2008, 17:11
Thanks for replies so far. Am guessing most people were put off by the length of my initial post!!

Sciend - what are you using to thicken the neocate? Will be interested to hear what happened at your paed appt today.

Essjay - the mucous in the poos and vomit have been there all along. The poos only changed colour when we move to neocate though. They've always been really soft - even when we were on thickened formula and no meds (when supposedly there is more of a risk of contipation).

Am hoping that the paed will suggest an endoscopy when I see him tomorrow - just feel we need to find out more! Have also been recommended an acupuncturist who specialises in babies/children with various problems, inc. reflux - have an appointment with him for november! Anything's worth a go...

Hiya!!! - Stick with it hun.... The neocate and the Losec are the way to go for now.... I think i mentioned that Neocate isn't for every bub but it's definately one of the best for your bubs to be on at the moment.... I know after 5 weeks you should have seen somewhat of a difference though.... Is bubs still as bad or do you think she has improved a little? Alternative therapies are wondefull but I would avoid acupuncture at this time and concentrate on what her issues are that are causing the problem..... An endoscopy will show alot... Hopefully.... Stool and urine samples also.... It really does sound like a milk allergy/intolerance and i believe that the current treatment is a good one. the best thing is she feeds well and is 'thriving'...
There are other specialized formulas that may be better for her if Neocate isn't working. Speak to your paed and discuss this...
It does sound as though he is on the ball and is doing everything needed to determine what is going on and that is great.... It's a really dark time, i understand but you will get there hun.
Let us know how you go with the paed....
x x

mercedez76
19-05-2009, 13:07
Hi! I know its been a while since you posted but just wondering how it all went for you? I have a baby in a similar position now.....
Thanks!

cuttiesmum
17-09-2009, 10:48
hiya
I am jusot starting down this pathway with 13 week old EC. aside from the numerous reflux symptoms he has the moucoid, explosive poos. have been nondairy for a week with no obvious change, ?because ive been eating lots of soy instead and he is possibly intolerant to that to. due to talk to gastro today about starting nexium granules as no improvement, i wanted to try the nondairy first. what are other mums experiences with elimination diets and reflux co-existing with intolerances.
r

gizmoduckus
17-09-2009, 10:57
Sorry cuttiesmum but I don't have alot of time to reply. If your bubs is intolerant to milk protein then he is most likely to be intolerant to soy as well. In that case you will have to speak to a paed about Neocate or Elecare.

If I remember, I will try to get back on a little later

HuntersMum
19-09-2009, 14:36
Cuttiesmum. Yes my DS2 has reflux and possible lactose intolerance. The Paed suggested me eliminating dairy from my diet. I have had only soy products for 3 weeks and no change in bub. I will try to cut out soy and see what happens. The paed also suggested giving bub lacteeze drops in his mouth, but after 3 days of that he seemed to get worse.

spidersue
23-09-2009, 13:45
Hi,

Basically if your baby is reacting to dairy and it is not a lactose allergy issue, then they are also likely to be intolerant of soy. Up to 10% of babies are - although most grow out of it around 3 years old or so. This is because they react to the protein in the milk and the soy proteins also cause issues. My little baby (now 18 months) also has this issue and still reacts to soy by getting eczema.

Although you feel like your baby is not as bad as some, it is still tiring and not very rewarding when you can't get a smile and they are grumpy all day. Can someone take him for a walk or something a couple of times a week so you can get some downtime? Also, don't take the simple answers - if you feel like he is in pain and things aren't working you are perfectly within your rights to keep asking questions of your GP, paed and other health care providers.

Reflux doesn't last forever and I forget the actual stats but every month that goes by means that he is likely to have settled down. By 18 months - 90% of babies are 'cured'.

My baby ate and ate and ate (breastfed actually so I was permanently attached some days!) as it made him feel better. This might be what is happening with your little one. Perhaps you can talk with your GP about ways to help him satisfy the need to suck and have something in his throat keeping the acid down whilst on the bottle.

Finally, I used the suspension liquid made up specially by a compounding chemist. It worked fine. Much easier than tablets for the first 6-8 months or so.

Hang in there - I hope some of this helps. Talk to others about it too, its surprising how many people have or have had a reflux baby when you talk to them about it and it helps you feel not so alone.

Eboniesmum
23-09-2009, 14:17
I need some advice from all you experienced reflux mums out there... please! Apologies in advance for a long post and lots of questions, but am at a real low point and need some help!!

My bub (20 weeks old) has been suffering with reflux pretty much from birth. He's never been as bad as some of the babies talked about on here... but he's been bad enough to bring me to tears and pleading with him to stop crying most days, to make his father virtually hate him, to make his 3-year old sister feel that Mummy doesn't have any time for her any more... etc etc... I think you get the picture?!


Thanks for any views...

Hi i have a daughter who had reflux probs and was on neoctae and losec and i now currently have a 4 month old bub who is on Neocate and Losec, i havent read what other people have written only read your post so sorry if i give you any advice they have

First of all before i answer your questions i just want to ask has the paed said anything to you about pyloric stenosis?

I have put my ds on solids and i have found it has helped a little bit with the vomiting. The paed told us to wait until 6 months but if at 4 months he needed solids then introduce him slowly to them

LOSEC-The paed is correct the Losec suspension isnt as effective as the tablet and yes it could be that because he spits it out he is still in pain, sometimes paed's will tell you to use losec and zantac or losec and mylanta together, we give ds mylanta just the original mylanta about 1ml 3 - 4 times a day aswell as his losec once a day. The losec and mylanta work in different ways apparently. I wouldnt say losec isnt as effective when given with feeds but if given about half an hour to an hour before a feed you have less chance of them throwing it up...i put the tablet in a syringe then suck up about 2 mls of water and squirt it down the back of his throat and most times ds will keep it down

NEOCATE- My bub also gets very hungry on neocate, its because its not a very filling formula like the others, its basically like water, our paed told us to add thickener to fill ds up more and to help with the vomiting. Your sons poo's seem perfectly normal, thats what happens on neocate, dark green lose poo's.

MUCOUS- my son is also like this and has been since birth, they say that its a sign they have cows milk protein intolerance (CMPI) they put bubs with CMPI on neocate, the paed told me thats what my ds has. Lactose intolerance is different to CMPI i was told by a few paed's.

ENDOSCOPY - I guess with this the dr can see whats actually going on in his digestive tract and stomach, my dd had to have a barium meal when she was 6 months old to see what was going on. Im not sure about treatment after it but maybe if they see that yes its reflux then they can try all the reflux meds until they find something that works but if its not reflux then they can stop with the reflux drugs and try something else.

Hope some of that answers your questions.

fiona76
02-10-2009, 16:20
The best advice i can offer you as someone who has experienced everything you are talking about is to get a referral to a Paediatric Gastroenterologist. They specialise in this exact problem. He/She will be able to tell you exactly what's going on, and should be able to offer you more support in terms of other medications, tests and formula's. We certainly never looked back once we were pointed in that direction.

When you know you have tried everything, and you still are not getting on top of it, this is where you need to go. There is only so much a general paed or a GP can offer. Most babies experience a degree of reflux which can easily be managed by a GP or general Paed, but for a small number of others where symptoms are not improving to the point of despair, it warants further intervention.

Best of luck