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

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

Home With A Diagnosis

After a five-night stay in hospital, which I talked about here, Max (and I) came home yesterday. It was an absolute relief to be back with Dylan and Alexandra and we got back just in time for a trip to the park before bed.

On top of his CDH (congenital diaphragmatic hernia), Max now has a diagnosis of F-PIES – food protein induced enterocolitis syndrome. This essentially is a condition whereby babies/children have a severe reaction to certain foods. Rather than have a rash or any external symptoms, they are affected internally.

Max’s symptoms that we noticed were: becoming pale and lifeless and white loose poos. He also had a low temperature of around 35 – something which he had when he was in hospital after birth too, acidosis, dehydration and was essentially presenting the symptoms of sepsis which is why they started treating him for an infection at first. Apparently all this, including the sepsis-like symptoms, is common for F-PIES as well as vomiting which he doesn’t seem to be hugely affected by yet.

People with the condition can be affected by all sorts of foods and some can only eat a handful of ‘safe’ foods. Hopefully Max is only affected by cow’s milk protein, although one in three also can’t handle soy. Many children grow out of F-PIES but there’s no way of knowing when or if this will happen.

Obviously Max starting to wean is a long way off, but generally the plan would be to try him on soy at some point and then if he tolerates that begin to introduce dairy into his diet. Best case scenario is he tolerates it and can grow up eating a normal diet. Worst is that he’ll have to avoid certain foods forever (but as the doctor pointed out, it’s quite lucky to have a condition where the cure is to simply not eat something). There is no medication which can help from what I’ve read, doctors simply have to treat any symptoms children present with when they’ve had a reaction.

While I’m still expressing milk for Max, I have to avoid dairy (the dietician said I could potentially eat soy if I wanted to, but I’m cutting that out too just in case as one in three seems a high number!) as even the small amount passed through breast milk can be harmful to him – although it was the higher amount found in formula which triggered his reaction on Friday. He’s also got special formula so if he needs top ups or I decide to stop expressing then he can safely have that as it’s made without cow’s milk proteins.

I’m sure we will document his F-PIES journey along the way as we know this is just the start of a long road – and weaning won’t be as simple as it was with his big sister Alexandra. But at least we have a diagnosis now and we can keep him well now we know why he became so poorly.

Harriet, Alexandra and Max x