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

Dairy And Soya Free

You have to like someone an awful lot to give up milkshake for them.

Long term readers of my blog will know I breastfed my first baby for just under a week before switching to formula for a variety of reasons not limited to her generally being terrible at feeding and me being incredibly unwell. She thrived on formula, started putting on weight, importantly didn’t become jaundiced again and has been on the 75th centile since she was a few months old. She’s a happy and healthy toddler who (touch wood) we’ve only ever taken to the doctor’s once and that was just to confirm a little rash was indeed viral as we suspected.

This time round I decided I’d quite like to give breastfeeding a go again. By the time he was a few hours old, Max was on NICU so I was advised to begin hand expressing for a couple of days then move on to using a pump. I welcomed the chance as it meant I could do something useful while the doctors, nurses and machines were doing their own extremely important jobs.

Fast forward to him being two weeks old and they were happy he was tolerating being tube fed following his surgery, so we could begin feeding him orally. That evening I opted to try him with a bottle of my expressed milk and he took to it so well we carried on doing it that way rather than him breastfeeding directly.

Skip to six weeks and Max was back in hospital after becoming incredibly unwell after we were advised to begin introducing formula as he wasn’t putting on weight quick enough. Three days into that stay and we were given a diagnosis of a severe dairy allergy and told it was likely he’d also react to soya. So I had a choice – either I could stop expressing and we could rely solely on prescription formula or I could cut out these things from my diet.

I chose the latter, not realising at the time how many things have dairy or soya in them! Dairy on its own isn’t too bad (apart from crisps – why do so many crisps have milk in them?) but so many of the alternatives have soya in that trips to the supermarket are no longer about choice but about having to have the one thing available.

I wasn’t allowed to give Max the expressed milk I had in the freezer and because I’ve had blood transfusions in the past I can’t donate my milk to an official milk bank but luckily I found a lady through Facebook who was collecting expressed milk for her baby (who was born last week! Congratulations!) so I didn’t have to face the shit situation of throwing four litres of the stuff down the sink.

Of course, some people would say I don’t have the right to moan because I’ve chosen to go dairy and soya free. But I’d invite those people to come and see how well Max takes a bottle of my breastmilk compared to a bottle of formula. With his reflux (a side effect of his hernia), he struggles with too much formula – even the prescription stuff which is free from the things he’s allergic to – and he’s like a different baby now I’ve managed to increase my supply and only offer one or two bottles of formula a day compared to the four he was having previously. We deliberately don’t offer him formula overnight and he’s so much more settled because of that.

So that’s my dairy and soya free story. I don’t know how long I’ll express for – I’d like to get to six months but we know weaning will be a tough journey with this one so it may be I keep going with the boob milk as we know he can tolerate it, especially if he doesn’t outgrow his dairy and soya allergy (his paediatrician doesn’t think it’s likely). In which case next March will be my next taste of chocolate, pizza or milkshake!

Some tips for anyone who’s having to cut out dairy or soya, in terms of what I’ve found out there:
– Koko products are really good. Their yoghurts actually taste like real yoghurts! And their coconut milk is much tastier on cereals than almond milk, in my opinion.
– Doves Farm do an excellent range of Freee bars which don’t contain allergens. I was looking for an oat based product to help my supply so was thrilled to find these in apricot, apple and even chocolate flavours.
– Co-Op’s donuts! Neither their custard nor their jam donuts contain soya or dairy. Winner.
– Pringles. Lots of crisps contain milk but their plain and Texan barbecue varieties don’t (possibly some others but I haven’t checked up on all their offerings).

Do let me know if you’ve found any other great soya or dairy alternatives!

Harriet, Alexandra and Max x