Allergic to Neocate?? WTF do we do now? (long)

(16 Posts)
gretagrape Fri 23-Aug-13 13:39:23

Hi. Apologies in advance for this rant but I am at the end of my tether and have no idea where we go with our son from here.

He was diagnosed with suspected cow's milk allergy at 8 weeks through my breast milk (symptoms were screaming all the time, hungry but hating feeding, vomiting, upset stomach, wind, not sleeping, spots on chest, horrendous cradle cap and congestion after feeding). I went dairy free and some of the symptoms did seem to clear after quite a long time.

It felt like there was still something upsetting him and I couldn't carry on cutting more and more out my diet plus it was making me really tired (advice from the dietician was ridiculous - "add Nesquik to your rice milk" but no advice about nutrients) so after 10 weeks of dairy free we moved him onto Neocate formula.

Since then, his eczema has become worse than ever, his cradle cap has come back, he has spots all over his chest, his poo is literally liquid and I've noticed a bit of congestion after some of his feeds. He's also dropped a bit on his centile - not enough to worry about but enough to make me think this formula isn't doing what it should. I should add that he is perfectly happy in himself.

I spoke to the hospital just now and am frankly livid and scared at the same time. All 3 peads consultants are on holiday (how? how? how?) but the doctor I spoke to has said there is obviously something in the Neocate that he is reacting to so I should think about carrying on BF and being dairy free again. WTF? Even IF I could get my milk back again it will take weeks for my body to get rid of all the dairy so he would be getting dairy free milk, and he also seemed to be reacting to various other things that I ate including eggs and fish. He also suggested moving to Nutramigen which is based on cow's milk protein but broken down to such an extent that the body can process it without a problem even if there is an allergy.

I feel so totally lost and pissed off at the NHS 'care' we have had so far - it was such a tough decision for me to give up BF but I did it because I truly believed I was doing the best thing for my son and that using Neocate would take his system back to a 'pure' level so when he starts on solids in a month we would be able to gauge every reaction as it happens. I know it's hard to work out what's going on in babies as their immune systems are so young but if I can't get my milk back and he can't have the 'purest' formula on the market then what the hell are we supposed to do now?

I'm now wondering if he even has a dairy allergy - really all of the symptoms that had improved could actually be attributed to him just maturing so I feel as though the doctors have almost taken an easy option and said he has an allergy as they don't have to look into anything else until he is on solids and/or has definitive tests/reactions.

I don't know what advice I'm after really, I just want to know if anyone has any suggestions about anything I've talked about or experience about Neocate and allergic reactions/misdiagnosis.
TIA.
x

Poppet45 Fri 23-Aug-13 14:25:31

First up it def sounds like cmpi so I dont think the docs have been fobbing you off. In fact at £40 a tin most people have to fight tooth and nail to get neocate. The hydrolysed nutramigen is a bad idea. You could relactate... It wouldnt be easy but you could keep him on neocate for three weeks to remove allergen traces from yr milk while u pump to rebuild your supply. But yes far from easy. Dc could have an issue with potato am fairly sure thats whats in some of the elemental formulae. They smell like it! My Dd reacts to spuds as well as soya and dairy. She was 3 months prem so her tum was pretty ropey for a long time and her weight fell off the charts too but I expressed for two months to build up a supply and shes still feeding now 2 yrs later kinda wondering how to wean her tbh... I miss chocolate and tea w milk in!

Poppet45 Fri 23-Aug-13 14:29:39

Oh and cmpi does improve by age... Its due to immature immune responses so it if eases it doesnt mean dc never had it. My dd can now cope with traces of soya and milk and her spud thing is fading too.

gretagrape Fri 23-Aug-13 14:40:47

Potatoes?! Blimey, this is all such a minefield. I know we are lucky to have had the diagnosis so early and to have got Neocate (which we only got because we were a total pain in the arse until they agreed) but as first time parents we have little idea about anything really (!) so it feels as though we are putting his life in their hands and if they don't know what's going on either it's a bit scary.
Thanks. x

Bakingtins Fri 23-Aug-13 14:41:39

Nutramigen make an amino acid formula that is an equivalent to Neocate (Nutramigen AA) and some babies seem to do better on one than the other. Worth a try at least.
I bf milk and soya intolerant DS2 for 2 yrs and had to be dairy and soya free for most of that time, though as he got better I could be less strict. I appreciate what hard work it is. How long ago did you stop BF? Do you think it's possible and do you want to relactate? It can take 6-8 weeks to see the full effects of the hypoallergenic diet, though worsening symptoms doesn't sound encouraging.
Is he on any meds for what sounds like reflux? IME even sorting the diet out, meds were also required.
It won't be for ever, though I know it must feel like it. DS2 is three now and has a normal diet. He still gets eczema if he has too much dairy, but it is only a case of keeping an eye on quantity rather than banning foods.

gretagrape Fri 23-Aug-13 15:28:18

I cut out more than they actually suggested as I didn't have eggs or soya and eventually cut out fish when he seemed to react each time I had it.
It's only 3 weeks since I stopped BF'ing so that might be worth trying in the meantime while we investigate the Nutramigen AA.
He is also on meds for reflux which also seems slightly worse on the Neocate (no distress but lots of throat clearing, coughing and regurgitation).
Thanks for replying - I will ask about the other formula.

Poppet45 Fri 23-Aug-13 15:51:13

Def worth investigating the nutramigen aa and more meds. Only a heroic dose of omeprazole worked for dd. It needs to be in the region of 3mgs per kg of bodyweight to work for severe cases. Ranitadine and gaviscon did feck all imo.

gretagrape Fri 23-Aug-13 15:53:17

Poppet, what was omeprazole for? We have Domperidone and Ranitidine - as with you I don't have much faith in them actually having had any benefits but I haven't been offered anything different with regards to treating the reflux.

gretagrape Fri 23-Aug-13 15:55:33

sorry - I guess it's for reflux but what aspect of it? Eg, we have the Domperidone to speed up the food through the stomach and the Ranitidine to stop the nausea (or vice versa, can't bloody retain information for more than about 5 minutes these days).

MikeOxard Fri 23-Aug-13 16:04:46

Is there anywhere you can get donated breastmilk while you work up your supply? You say it'd be a few weeks before the dairy is out of your system; firstly, are you sure? And secondly, even so, he seemed better on breastmilk than formula didn't he?

gretagrape Fri 23-Aug-13 16:41:16

Well, when I first cut out dairy we didn't see any improvement for about 4-5 weeks and the pead said it was because of the time it takes all the dairy proteins to leave your system so I'm guessing it will take a while for me to be classed as 'dairy free' as far as my son is concerned.

He was better when I went dairy free but then some symptoms returned which was why in the end we decided to move to the formula. I suppose with hindsight it was better the devil you know - he was perfectly happy on the breastmilk at the end, it's just that I thought the formula would clear all his symptoms so we'd be clearer about what he might be reacting to once he had it firsthand in the form of solids.

gretagrape Fri 23-Aug-13 17:05:11

Bloody hell, I've just been reading another thread and it mentions that Ranitidine degrades after 2 weeks. I am still using the same bottle we got about 12 weeks ago - I checked loads of times on the bottle and insert but it says nothing about how long to use it for.
God, now I'm in full paranoia mode - maybe I've been causing all his symptoms to get worse because I'm giving him medicine that should have been chucked out weeks ago?

Poppet45 Fri 23-Aug-13 17:53:51

Right first up yes it takes two to three weeks for the cmpi to leave your milk and unfortunately donor milk is not screened by donors' diet so will likely include milk soy egg fish traces. Theres also a risk with relactation that baby may now refuse the breast as they're used to a bottle but they may be fine. Yes to getting fresh ranitadine it works as an antacid to stop the silent reflux burning dcs throat. However the best antacid is omeprazole which switches off the stomach's acid making protein pumps. Omeprazole and bfing with the right dietary restrictions gave us our sanity back... the right dose could also help dc adjust to neocate.

Poppet45 Fri 23-Aug-13 19:13:21

Liqid omeprazole needs replacing every two weeks and is £100 a bottle hence its a fight to get it but never heard that about ranitadine...

gretagrape Fri 23-Aug-13 19:40:13

Hmm, and I was wondering why the GP has never mentioned omeprazole! We've managed to get an appointment with the childrens unit on Tuesday rather than waiting for our first allergy clinic appt at the end of Sept so I'll talk to them about the option of the Nutramigen AA and the omeprazole.
Thanks for all your help.
x

Bakingtins Wed 28-Aug-13 20:25:45

Most babies are given losec MUPS (omeprazole in dissolvable tablets) which are not expensive. The liquid also tastes vile. We gave the tablet dissolved in water with an orange nurofen syringe.
We were on ranitidine previously and not heard that the liquid degrades. It is however well known that it works less and less well over time due to a process called tachphylaxis where the body gets better at breaking it down or produces more of the H2 receptors that it blocks so you need to keep increasing the dose to get the same effect.
Ranitidine/ omeprazole are both antacids but a different class of drugs. Every kid I know of with severe problems with reflux has ended up on a ppi (proton pump inhibitor) either omeprazole or lansoprazole, ranitidine has not worked in the medium term.

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