I don’t think I’ve updated about Max’s allergies in a while and everything is sort of whizzing by in a big fog of crazy days and nights, so I thought I’d better commit pen to paper – or hand to keyboard – before he’s 30 and I’ve forgotten all about food trials and nappies and all that faff.
Super quick summary for the uninitiated: Max was diagnosed with FPIES at six weeks old, a condition in which there’s a delayed internal reaction to food proteins. His initial trigger was dairy which caused us a five-day hospital stay. We were also advised to avoid soya. I stopped eating both while I expressed for him – he was combi fed so he also had special formula. When we began weaning after a while we were advised to do food trials where one new food is introduced each week. Thankfully we had lots of passes so while there are a few things he hasn’t tried, we haven’t been trialling for a couple of months as he eats a fairly ‘normal’ diet aside from soya and dairy.
We had two goes when he was first weaning of introducing soya, both unsuccessful, so we decided to hold off a bit and then the time came when everyone was happy for us to begin trialling again. The idea was to use a ‘soya ladder’ where you begin with foods which have a small amount in, building up to soya yoghurt/milk. First time of doing this was around three months ago perhaps and resulted in some horrendous, horrendous poos and disrupted sleep. Fine said the dietician, try him every other month with it.
I have been putting this off and putting it off. Partially because he went through a huge phase of not sleeping so we wouldn’t have been able to tell if he was reacting or just going through this leap he had been going through anyway. Anyway we bit the bullet last week and bought some Pom-bear type crisps which are step one of the ladder.
Day one there was a weird poo, which happens with babies from time to time so we didn’t think much of it. Day two he slept appallingly – again it’s been known to happen without any cause so we kept on. Day three and as soon as a horrible poo happened, we called off the trial straightaway (and whaddya know he slept terribly again that night! Slept isn’t even the word for it. He was thrashing around all night next to me on the sofa like an eel being tortured). The constant crying, moaning, being grumpy and clingy was also not a great side effect.
So for now we want to say ‘enough’. He has such a varied diet because he’s got so many safes that we don’t feel there’s much, if anything, to gain from him being able to eat soya – and if the professionals want to contradict that then they should find ways to give him whatever magic nutrients soya is supposed to give without him having to suffer going through trials. Now we want to wait until he’s at least two (end of next March) before we try again – at least then he might be able to give us an idea of whether his tummy hurts if it does.
We often follow health professionals’ advice because they do know best in a lot of situations. But I really struggle with the idea that he’s going to be magically ‘cured’ and be downing soya milk by the pint in two months. If he starts doing well with step one of the ladder when we try again next year then great! Fab! We’ll be chuffed. Avoiding soya as well as dairy is awkward so it’d obviously be happy days if he gets over these reactions. But when your child is screaming at 2 in the morning because they’re uncomfortable it’s not hard to see why you wouldn’t be keen to repeat the process in eight weeks’ time!
Harriet, Alexandra and Max x