We Hate Soya

We hate soya, we love sand.

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

Weaning – A Wheat Allergy Too?

Last week, I posted about the early days of weaning Max and promised an update so voila! To go back and provide a quick summary from the start: at five weeks old, Max was readmitted to hospital as he was pale and lethargic. When we got to the children’s ward, his temperature was low and he’d lost around 11oz I think it was in three days, during the evening his poos were getting paler and paler until they were completely white. They tested his blood which was too acidic and started giving him medication to reverse that. Initially they thought he may have sepsis, or have an underlying liver or kidney condition as the tests they’d done had also shown up problems with both of these. Eventually they decided he had FPIES, a type of allergic reaction which is internal and can’t be tested for. It takes a couple of days for an FPIES reaction to show up and it can mimic the symptoms of sepsis; there are four reactions ranging from mild to moderate to severe to life-threatening and his was deemed as the high end of severe.

So we cut out all dairy and soya. Last week I talked about introducing soya (we’re not trying dairy until he turns one) and how we think he’d reacted to that. Two days later, he started being sick a lot. He’s got reflux so we’re used to him being sick a little (and Alexandra was the Vomit Kid despite having nothing medically wrong with her), so we’re well used to a little spew. But this was severe. It seemed like every half an hour he was being sick. Otherwise he was completely well, so there was no cause for alarm. But on the second day we started scratching our heads trying to work out why, our initial thought was soya, but the sequence of events didn’t make sense. We also considered whether having his flu jab had caused it, but again it didn’t really make that much sense. I scrolled through the food diary I’ve been keeping for him and realised the only thing we’d introduced in the previous couple of days had been wheat in the form of cereal in the morning.

We didn’t give him any wheat starting from the Monday (after a weekend of vomiting) and he’s stopped being sick as much. We still get the odd tiny bit but nothing like those two days. I spoke to his paediatrician later in the week who confirmed that was the right course of action and we should leave it a couple of weeks then try soya first, wait for a reaction or not, and then try wheat once we’ve established the soya situation.

It’s a bit of a bugger really. We’ve gone from knowing it’s unlikely he’ll ever tolerate dairy and being hopeful that he’d be able to have soya (we were told a third of babies who are FPIES to dairy also react to soya) to now thinking dairy, soya AND wheat could be totally off the menu. For a couple of days he ended up basically back on fruit and vegetables and then I spent ages searching the shelves of Asda for some different options for him. There are choices out there which is great, but I find many of the dairy-free alternatives contain soya and now wheat is an added complication! We’re going to look into the possibility of getting a bread maker as free from bread is so expensive! And I’m sure there are other ways we can give him a varied diet without breaking the bank – we’re meeting with the paediatric dietician next week also so they’ll be able to help further.

But for now, it’s the daily task of trying to get some tasty food into him and wondering whether every bit of sick, irritable behaviour or dodgy poo is a reaction or just part of normal baby life. Plenty of people have said ‘oh maybe he’ll grow out of it’ (probably going by their experience that a lot of babies who have other conditions do) but the doctor has firmly told us he doesn’t think Max will ever tolerate dairy judging by how small he was when he reacted and how bad the reaction was. Either way, I’d prefer to prepare myself for the worst possible scenario of life-long allergies and then we can be pleasantly surprised if one day it turns out he’s grown out of it!

Harriet, Alexandra and Max x