This is the second part of my series of blog posts documenting our journey with Jesse's food allergy diagnosis. it was written just after our first appointment with the team at The Evelina Children’s Hospital at St Thomas’ in London. To read part 1 click here
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These words were something I wrote down on one particularly bad day before we had got everything under control. I wanted to share as I think it's also important to mention how these issues can make a mother feel (especially one who is breast feeding) and how the improvement isn't always linear - there can still be good and bad days for lots of reasons....
"I’ve watched Jesse today, clearly in pain, writhing around in his cot trying to sleep but being constantly awoken by the trapped wind, which from time to time erupts as loudly as an adult, giving temporary relief. His poor little face has barely cracked a smile all day and my arms were his only source of comfort. It’s been horrid. Horrid to see him like that, horrid knowing that it was something that came from me and horrid because I know this journey is far from over. And as a lover of all food, selfishly I can’t help but feel robbed. I kissed goodbye to dessert back in May. I am meant to be out for dinner with friends on Thursday but I’m not sure if I can face another high street menu with practically nothing on it that fits our allergy free requirements."
So for the past 4 months (it feels like so much longer!) both Jesse and I have been avoiding all dairy, eggs, soya and coconut (the coconut was in response to 3 episodes of projectile, exorcist like vomit within a few hours of him eating it!). I’m pleased to say that the improvement in his eczema and gastro symptoms has been immense. We can’t quite clear the eczema from his ankles and backs of his legs (classic trigger points) but his face is crystal clear and his hair has sprouted. He has also become much more settled at night, increasing the length of time he goes between wake ups (yay!). Some of this is to do with normal baby development but I can see (and hear) how much more comfortable he is which has to help. He is also pooing practically every day – as opposed to the once a week he once was. I’ve had one attempt to introduce dairy via my breast milk but that ended with clear abdominal discomfort for Jesse. And then a similar reaction when I tried something with baked egg whilst on holiday. So we have kept with the exclusion.
Getting back into the NHS system was tricky as none of our local hospitals had any appointments but then we requested a London hospital - The Evelina Children's Hospital at St Thomas' and we were able to book an appointment a month or so later! And that’s where we have been today – 27th September 2017. Jesse had a repeat of the skin prick testing that he had before but with a few others added, including some tree nuts, cat dander and coconut. I’m really happy to report that he has outgrown is IgE allergy to egg but that the Doctor thinks given his symptoms upon my reintroduction that he still has a non-IgE reaction to dairy (and soya is off the menu given its general association with gastro symptoms in children). Unfortunately, we also found that he has a IgE allergy to cashews, and as a result of this, quite probably pistachios too. So, you win some, you lose some. But another plus sign is that children are most likely to outgrow allergies to egg and dairy and the earlier they are introduced (slowly, in small amounts, baked) the more likely they are to do this. So, we now have a little plan in place whereby we start VERY slowly via breast milk. We’ve chosen to give the coconut a go first as this is the least likely to be causing a reaction now. Then we’ll move to milk and then finally egg. This is a slow process and how quickly we can move on will really depend on how he reacts at each stage. But for those of you with any knowledge of the milk ladder, we can’t go further than stage 4. And on the egg challenge the hope is we complete stage 1 in approx. 3 months.
Our next follow up is a telephone appointment with the Dietician in December.