So I've been in two minds as to if and how to post this blog. I started it months ago as a way of documenting what we have been through with Jesse in the past year. A reminder of how hard the journey to a diagnosis for food allergy can be. It's a bit of a essay and it's full of emotion (although I've edited and removed some of the more raw moments). I hope it doesn't come across as melodramatic (I'm well aware of my tendencies in this area!) but that perhaps it might give hope and direction to some others who are on similar path. Or maybe it just resonates with you. I know there are babies (and parents) out there who continue to suffer far more than Jesse does but everyone's journey is unique to them - this is our story. I'm probably going to break this down into a couple of posts to keep each one a little shorter. So keep an eye out. And please do share your story with me. Either at the bottom of this post or on Facebook/Instagram or Twitter.
I started writing this blog post a couple of months ago but as with everything in my life right now, it all takes longer than expected (and that I want). I’ve sat down tonight with renewed motivation to share our allergy journey after a pretty miserable day for Jesse, and me. We had Jesse’s allergies officially confirmed on 16th May 2017 – he was exactly 8 months old – and since then both he and I have been cow’s milk (dairy), eggs, soya and coconut free. He has an IgE allergy to eggs and non-IgE to dairy. The soya exclusion is because over 50% of children who react to dairy will also react to soya and the coconut is as a result of violent sickness within a few hours of consumption on each exposure.
I first thought there was something not quite right with Jesse only a few days after his birth when, he literally shed his skin like a snake. As his big sister said when she went to cuddle him ‘urgh I don’t like it’. But you know, some babies do have sensitive skin when they first arrive and the cradle cap is something that all babies get. Then there was the poo. As an exclusively breast-fed baby the poos are pretty runny but for poor Jesse it literally was running out of him. Not in excessive quantities but there was always something at every nappy change and he couldn’t have a bath without me having to wash the towel. The runny poo continued until Christmas when he was 3 months old and by this point the skin on this face was red raw but I was told by the health visitor that it definitely wasn’t eczema. I wasn’t convinced. The poor baby was rubbing his head in his Snuzpod like a kitten in cat nip and everyone seemed to be commenting about his face.
I was in and out of the GP surgery for the first 8 months of Jesse’s life but more for me than him. I had a terrible time with mastitis, suspected thrush, post-natal depression and appendicitis but obviously Jesse was with me for all of it and so occasionally the subject would come up (or one of them would think I was there about the state of his face) and I’d mention the diarrhoea, his skin, the constipation, his smelly wind, the vomit, the fact he spent most of the night groaning and squirming in discomfort. Each and every time, I, along with the GP made excuses ‘but I know breast fed babies have runny poo’, ‘I know it takes a while for their digestive systems to settle’ because I didn’t want them to think I was being neurotic but something in me was telling me something wasn’t right. If not, why would I have even mentioned it? But the other thing I reminded myself on a daily basis was that all of these symptoms can be a normal part of life and development in a new born baby. We all know about colic? The experts still don’t know exactly what causes it but it doesn’t actually mean there is anything wrong! Teething, growth spurts and generally adapting to life outside of Mummy’s tummy can bring on any of these symptoms.
However, the bit that really did bug me was that All THREE GPs told me it wasn’t possible for baby to react to food I was eating via breast milk. WTAF. Now I couldn’t be bothered to argue, to tell them I was a nutritionist specialising in babies and toddlers. I can fully understand someone saying ‘I’m afraid my medical knowledge around breast feeding is limited’ or even ‘I’m not sure’ but surely this response constitutes negligence? Even the NHS website discusses allergies in breast fed babies. It shouldn’t have mattered what they said, and I don’t think it really did to me but I’m the exception because I know better. Most other new parents would take a GPs advise as gospel (especially first time parents).
In November when Jesse was about 6 weeks old I decided to go dairy free but in my post-partum haze I completely forgot about the link with soya. I was also struggling with a non-sleeping baby and a ‘spirited’ toddler along with a husband who thought he was about to be out of a job. My mind was all over the place. I can’t remember exactly how long I stuck it out but there didn’t seem to be much improvement and then Christmas arrived and the mince pies were a temptation too far. I tried dairy free again at another point but I really can’t remember when now. Neither times did I see a dramatic improvement in any of the symptoms, but then what symptom was I supposed to be looking at? And what about the fact that he had just gotten over yet another sniffle brought back by his sharing is caring pre-schooler sister! And was I just ‘lucky’ with Amabel’s sleeping first time round?
On 23rd January (Jesse was 4 months old) the GP finally decided that he did in fact have infantile eczema (it had now spread from his face to the creases of his arms, wrists, legs and ankles) and prescribed Cetraben. He reacted angrily to that so was given Aveeno which definitely seemed to calm things down. Around this time Jesse also started to drop through the Centiles on the growth chart. I actually think this was down to a milk blister restricting the flow of milk but again we can’t be sure. As a baby my sister suffered from terrible eczema and ended up at St John’s Institute of Dermatology in London, so I’ve seen it first hand, but I never really understood how helpless it makes you feel as a parent. Watching your baby in discomfort, desperately trying to stop them scratching and constantly having to talk about it with people who (kindly) offer advice.
We started weaning on 27th March when Jesse was 6 months old and it was around this time that we decided to ask the GP for a private referral for allergy testing. Although nothing immediately apparent had arose in the first week or so, I consciously didn’t introduce dairy but there had been a worsening in his eczema. Unfortunately, but quite predictably, the GP we saw dismissed our concerns in the most condescending manner, when we advised him we simply required a referral for a private appointment he made a comment about our chosen consultant being a nice guy who would sit and ‘listen’. I quickly responded saying I hoped he would use his clinical judgement to assess my son rather than just ‘listen’ to me like I was some crazy hormone fuelled hypochondriac. Needless to say we felt SO fortunate to have the private healthcare. THIS IS MY BABY AND SOMETHING isn’t right. Now I completely understand the financial constraints of the NHS etc. etc. but there is zero excuse for anyone to be treated like that by someone simply because they are in a position of (supposedly) superior knowledge and power. Since when do we give so little weight towards Mother’s (or Father’s) intuition? Never mind that the NICE guidelines actually supported a referral in our case.
Anyway we ended up at The Harley Street Clinic Children’s Hospital and on the same day Jesse had skin prick testing with a lovely, highly skilled allergy nurse, followed by a review with the consultant. Immediately it was confirmed (on the weight of clinical evidence) that Jesse has a non-IgE dairy allergy. However, the shock was to see a large wheal develop in reaction to the skin prick for egg. I was so disappointed. Fortunately for Jesse I’d persevered with the breast feeding (even during my 2 day stay in hospital having my appendix removed, when my friend breast fed him for me!) and thank goodness I did as I dread to think how his little body would have reacted to a cow’s milk formula. Again another sign that deep down I knew what the issue was and was doing my utmost to protect him. But I was advised that I also had to cut dairy, egg and soya in order to fully assess for improvement.
Looking back at the pictures and going back over the time line of events it looks so obvious that something wasn’t right. I definitely tried to ignore the extent of his eczema (encouraged by the GPs and Health Visitors). Hindsight is a wonderful thing. But I’ve learnt that I really need to trust my own instincts and knowledge in this area.
Keep an eye out for another post about our lives post-diagnosis and an update on where Jesse is with his allergies in the coming days. And please do share your story and thoughts. If you want to join one of our Weaning in a Nutshell Workshops then please follow this link.