Miserable baby and miserable mum - is this normal for milk allergy?

[veryworriedme]

my 14 week old has seen dr Lindley at GOSH who says she is allergic to cows milk and has put her on neocate. We are over 3 weeks in and if anything she seems worse. It is a huge struggle to feed her, taking the whole of the time she is awake to get 90 mls or so down her. She is never comfortable, screams and arches through feeds, only smiles when first get her up ( before fed) and is subjected to the snot sucker thing constantly so she can breath properly. I find it impossible to leave the house with her and it's pretty difficult having people here too as I feel I need to focus on her 100 percent. This is a miserable existence, I worry that it is affecting my bonding with her and I worry that it is affecting my relationship with my toddler ds. She seems textbook reflux but dr Lindley says reflux doesn't cause pain and it may take time for the neocate to do it's stuff.
Sorry for long and rambling post, I guess I am not even sure what advice I am seeking. Is this a usual experience? How do you all cope? Am I just being too neurotic and should leave the house whether she has fed or not? Has anyone else been told reflux doesn't cause pain?
I did not realise there was an allergies section until now and so will search through the threads...apologies in advance if this is bog standard stuff

I'd have thought you'd see a marked improvement by now to be honest. I don't have personal experience of Neocate, but I'm sure someone else will be along to advise. When we removed CMP from our diet, there was substantial improvement within a week.

I don't have experience of reflux either I'm afraid, but I thought it was very painful for them. If I were you I'd take her back to the doctor and explain there's been no improvement. I don't think this sounds like a straightforward milk allergy, as the neocate should have helped that. It seems there's more to it.

Sorry - not very helpful, I know!

Absolutely normal for you to be feeling like you are, it is draining looking after babies when they are in pain/not feeding etc.

I agree with the earlier post to try to get further doctors advice after this long with no improvement - the thing about reflux not causing pain doesn't sound right to me either. We go to a different hosp but in my experience they are helpful if you contact them between appts - is there an email address or even a dietician you can ring to try to get back in the system?
Sorry no real advice to offer but I would say yes try to leave house if you can, as a general rule it seems to help me feel better even if I only go to shops/for a walk. I found a baby group with health visitors - I know the actual advice can be a bit random and unhelpful in cases like this but I find talking to people helps a bit anyway.
Hope she settles down soon for you x

Hi there, poor you. Is your dd on any medication for her reflux? I've known babies that have a CMP allergy and terrible reflux even when they have been on hydrolysed formula (neocate/nutramigen). DD1 has a CMP allergy but no reflux. DT2 had terrible reflux but no CMP allergy.

Your dd should at least be on infant gaviscon (which you mix in with every feed). It's quite common for babies with allergies to have reflux and it definitely does cause pain. DT2 used to writhe around in pain before she was diagnosed and medicated. If infant gaviscon doesn't work then there are other medications you can be prescribed.

You are not being neurotic at all. Unfortunately you often have to push and push to get the correct diagnosis/help. Sorry for brief response in a rush

can take about 6 weeks, its not the new milk, its giving the gut time to heal.

am so sorry. but hang in there, this will pass.

why not ring the hosptial to ask them about this? i ring my sons allergic clinic for advice, and my sister has her kids in GOSH, so i think you can ring GOSH for help.

Have to agree that it can about 6 weeks to see a marked improvement in CMP allergy symtoms. However, I totally disagree with the doctor's comments about reflux not being painful! My DS had 'silent' reflux until he was 2 and 1/2 (linked to his allergies) and he was often in a lot of pain. My mum suffers with reflux (no allergies) and assures me it can be agony at times! I definitely think it's worth asking for some reflux medication such as Infant Gaviscon. I would also suggest making sure your little one is sat upright during and after feeds to help with the reflux and placing a pillow under the top end of the mattress to help while she's asleep (allows the acid to go back down into the stomach rather than up into the throat).

My DD was put on nutramigen which is for mikl allergy.
I was told my DD might not tolerate Neocate because it doesnt break down the particles like Nutramigen does or along those lines.

My DD saw pretty much immediate improvement. The allergy nurse said that if she was taking it willingly it probably meant it was right for her even though it tastes horrid.
If I were you I would go back and see them again. Tell them what is happening. There are other options.

Or you could try a bit of Nutramigen. Expensive but see how it goes? You can but it from the chemist on a one off but you would need it prescription if doing it long term.

thank you so much everyone for the replies. been wanting to post for ages but have had no internet connection (argh! not fun when trapped at home). we went back to see dr lindley and i think he was a little surprised at the lack of improvement. my poor dd has only put on a pound in the last month whereas she put on 2 pounds a week when i was bf in the first 2 months. dr Lindley said i have to continue trying to get the milk down her as otherwise she will have to go on feeding tubes but if no improvement in the next 2 weeks he will do an endoscopy. he wondered whether she was allergic to the hydrolysing agent in neocate (!!!). i asked him to expand on what he had said about reflux. he says that the info out there on reflux is wrong, that reflux is simply the act of vomiting and is only an issue when this means a baby cannot grow as they are throwing it all up. he said that all babies reflux but do not produce sufficient acid for the vomiting to hurt. when a baby is in pain it is because something else is going on, in my dd's case, an allergy. the allergy can make vomiting (and feeding) hurt as the nerve endings are affected. i asked why there were so many anti reflux meds out there and he said there was clear evidence they did not work but because babies grew out of the problems it was not questioned. it all made sense at the time but it is very difficult to continue to have faith that doing all i can when she is so distressed. anyway, i thought what he said may be of interest given the general info we all get about reflux.

Just wanted to clarify Allboxedin that in fact it is the other way around, Neocate is an elemental hypoallergenic formula where the proteins are fully broken down into amino acids so is more suitable for those children who are most sensitive whereas Nutramigen is a hydrolsed formula that a few children with CMP allergy still react to.

I thought that (could be wrong) infants with food intolerence had a problem with milk protein irritating the valve at the top of the stomach. hence causing the vomiting, and the stomach acid ratio causing food to be poorly digested. Also giving pain, as acid is released out of stomach.

lots of babies vomit if they over feed, so that makes sense. but a allergy baby would be in pain from the rising stomach acid.

it can be a problem for the other end, normal stools but in great pain, as milk protein irritates the linning of bowel.

hope u can get this worked out for you baby.

I had to respond to this as ds2 was put on neocate at 13 months (when I stopped bf) and suffered from severe reflux until he stopped taking it at about 2.3 years. All the HCP's said neocate could not be the problem, but once we stopped giving it to him, it was like we had a different boy! He went from projectile vomitting 5-6 times per day and not wanting to eat, to actually asking for food and only vomitting once per week - OK, so that is still more than most children, but it was an enormous difference for ds2.

Ask to try different hypoallergenic milks until you find one that suits your dc. It is tough. Have you also tried some anti-reflux meds? Gaviscon was essential for us whilst ds2 was on Neocate and later, domperidone did wonders (once he was off the neocate, for he less frequent, but still regular vomiting).

Btw, at the time I googled for similar problems to ours and found that many people reported more severe reflux on neocate, each time HCP's had said this was not possible on neocate!

Well my dd is now 18 weeks old and still no difference. We took a second opinion from Professor Lack at the Portland and he was horrified that she had been left for so long . He said the neocate should work within 3 weeks tops and that there was clearly something else wrong...sigh. Really just putting this up here for the benefit of anyone looking at this thread in the future. The point being that if neocate doesn't work it is not just a milk allergy.

Poor you veryworriedme. At least it sounds as though you're seeing someone who clearly wants to get to the bottom of the problem. Hopefully you'll get some answers soon. Please let us know the outcome as I'm sure it will help others in a similar situation. And I still say reflux causes pain...

veryworriedme, at least you are seeing the right people to sort out this problem. hope this gets sorted. (Lack was our sons first allergy doc!)

Thank you freefrommum and eragon. Unfortunately because it is not the allergy that is causing the continuing problems, prof lack can't help. My dd is having an endoscopy and three other dreadful sounding procedures at GOSH tomorrow. Am pretty anxious about it but an desperately hoping the problem will be found. Prof Lack was pretty shocked she hadn't been put on reflux meds but i have to reassure myself with the thought that he is not a gastroenterologist and dr Lindley is supposed to be a real expert on reflux. Ho hum, would it have hurt to try? Will update because I have found mn experiences and advice so helpful and would hope someone else may benefit. Gawd, not looking forward to dealing with a baby who has not slept or fed for 7 hrs by the time of the op.

Omg you poor thing! What a nightmare. Just to reassure you on one thing, my DD had an endoscopy last April and it was fine. She had it under general anaesthetic which was a bit scary for me but went well. I know they sometimes do it under heavy sedation rather than general anaesthetic too. Her throat was a little sore when she woke up but that was all, no other symptoms. Of course, my DD is a lot older than your little one but I'm sure it will all be fine. The surgical staff will be used to doing these procedures on little ones & will understand your concerns I'm sure. My advice would be to take some favourite toys/blankets/comforters for baby to distract & make them feel comfortable plus plenty of reading material, drinks & snacks for you while waiting around. Will be thinking of you, hope it goes well & let us know how you get on.

hello veryworriedme. Just wanted to wish you and your little one all the best for tomorrow. Fingers crossed that they'll be able to get to the bottom of what's causing her so much pain.

Take care.
xx

Good luck for tomorrow veryworriedme - thinking of you and your DD

Well, back from hospital and my dd was amazing. Didn't complain at all except for when in took 5 attempts for them to find a vein. I only got teary once, when we walked into theatre and there were 8 gowned up grown ups to one tiny little dd but as everyone here has said it was me rather than her that was upset. The facilities at GOSH are amazing, I only wish all hospitals were so well funded. We wont know the results of the biopsies for a week but will update then. Thank you so much for posting, I saw them while she was in theatre and felt comforted x

So glad it went ok. Let's hope the results give you some much needed answers.