Sense about science on children’s allergies
Last week I was pleased to hear about the Sense about Science report on children’s food allergies which stated the scientific misconceptions regarding food allergies and their prevalence. It would seem from the school playground that every other child has some form of food allergy or intolerance and from the hysterical behaviour of some parents that their darling offspring are at constant threat of anaphylactic death. One study in the Sense about Science report stated that whilst 34% of parents said their child had an allergy, only 5% actually did. Worryingly, the report suggests that many children are suffering from malnutrition due to exclusion diets, often initiated on whims and estimates rather than on hard evidence.
You can take it as read that I am a non-believer in food allergy and intolerance being the harbinger of learning difficulties, inattention, anxiety, bad behaviour and the other ills that some people believe. In fact, aside from coeliac disease which is a bona fide gut condition where gluten should be excluded from the diet, I don’t really buy into intolerance at all. You could say that I have an intolerance for intolerance. I’m sure that it does exist in some people in severe and debilitating form, but I am also sure that for most people who claim to be intolerant of something that a bit of bloating and flatulence do not a disorder make.
Typical then that Lil Bro should have a list of allergies as long as my arm.
It started with a spot of eczema on his forehead when he was 3 months old. Despite plenty of emollient creams, by 4 months it had spread to his cheeks and become wet and weepy eczema. I was concerned about infection and he was treated with antibiotics. It didn’t go away. The GP suggested that I cut out dairy, eggs and nuts from my diet as I was breastfeeding. I duly did this albeit reluctantly as I am an avid consumer of milky teas and cake and get quite grumpy when both are denied.
Nothing much happened even on this exclusion diet. Lil Bro’s eczema got worse. He was prescribed a second course of anti-biotics. On Valentine’s day evening, Banker and I abandoned our romantic dinner plans to spend the evening in A&E as Lil Bro was covered in raw-red wet and weepy rash from scalp to toe. Was it an allergic reaction to the anti-biotics I had wondered?
His scalp to toe eczema continued despite applications of weak steroid creams. My beautiful baby boy had skin that was painful to look at, the facial eczema being the worst. Despite twice daily emollient applications and infrequent oily baths, it didn’t get better. At night time, despite short nails and gloves on his hands, he would scratch himself till he bled, and I could hear his wriggling and itching movements in his cot constantly. Often I lay awake tearful holding him in my arms to sleep so that I could prevent his scratching. The final straw was when one time I was driving and I could hear him crying in the baby seat behind. By the time I had pulled over, his face was covered in blood as he had scratched himself across the face where the eczema had been red and raw.
I took him to see Dr Atherton at Great Ormond Street Hospital. A friend who worked at GOSH as a Consultant advised me that he was the best dermatologist in the country. Lil Bro was prescribed wet wraps and Protopic cream. The small print on Protopic mentions a risk of cancer, but Dr Atherton assured me that this was small print and quoted the statistical risks. I was happy to go with the medication, I was desperate. It helped stabilise the eczema, but it by no means got rid of it. Lil Bro was wet wrapped for a total of 6 weeks. Dr Atherton had mentioned that most parents gave up by 3 weeks and was surprised when at 6 weeks, Lil Bro was still in full body wet wrap. I confessed though that I was at breaking point, but at least Lil Bro’s eczema was under some control. Skin was red, but no longer wet and weepy. The wet wrapping, as well as soothing the itch also prevented any skin damage from scratching. The twice daily wet wrapping though was getting me down. Lil Bro was basically bandaged like a mummy all day. I refused to let wet wrapping ruin Lil Bro’s life. I looked into his beautiful, brown eyes that poked out from the bandages with all my love, and often, being the sweet darling baby that he was, he beamed back. Despite his troubles, he was the sweetest, happiest child. We went to mother and baby groups, and it didn’t bother me if children asked me why he was wearing a mask (which was like a balaclava made of dressing material), they just seemed curious. Big Sis had no problem with the mask at all, but it sometimes got a bit much when other parents came up to me with their little ones saying that they wanted their child to play with him so that they could be “accepting of children who were different”. Other people asked me if I put the mask on him because it was cold. I really didn’t understand these people – did they think that I thought bandages were a substitute for a hat and scarf…?
Dr Atherton recommended an allergist Professor Gideon Lack. I asked around my medical colleagues and confirmation came that Professor Gideon Lack was the best allergy specialist in the country. His prodigy Dr Adam Fox is now often in the media as the go-to allergy specialist, but why go to the doctor when you can see the Professor? By the time we saw Gideon Lack, I was pretty sure that Lil Bro had food allergies. Having breast fed for 6 months, I tried to wean him onto formula. After several desperate attempts that resulted in wholesale visceral rejection of formula (cow’s milk and soya) our food allergy fears were confirmed in skin prick tests and blood tests. Along with allergies to milk, eggs, all nuts, all seeds and soya, he was also testing allergic to wheat, beans, peas, pulses, lentils, banana and kiwi. Professor Lack was sceptical about the wheat allergy as this is very rare. He advised us to try him on wheat pasta at home. We did, and wheals appeared almost immediately on ingestion confirming a positive allergy to wheat. Lil Bro was prescribed Neocate formula, a disgusting tasting blend of amino acids that only the truly allergic could stand. Once Lil Bro started on this formula, his skin came under control without wet wrapping.
The funny thing about being told that Lil Bro had allergies was that my first concern was not about his health and diet, but about his psychological outcome. Maybe this is not so strange, but a consequence of my profession and prejudice. My first thoughts were: I don’t want him to be the skinny, snivelling, wimpy kid that has to sit out of football games puffing on an inhaler or sit in the corner of birthday parties telling people how he can’t eat things while eating his own carrot sticks from a paper bag brought from home. I wanted him to be a participater, a life-enjoyer. I want his allergies to have no bearing on his life at all.
Thankfully, as we saw a leading expert in the field, we were given expert advice, which I fear is not given to the majority of parents. Whilst we were given Epipens, we were explicitly told that the likelihood that he would have an anaphylactic reaction was only to peanuts and that this risk amounted to the risk of being run over by a car (i.e. not very likely). We were explicitly told that the majority of children outgrow all their food allergies by adulthood, save for peanut allergy which only resolves in 20%. We were told that the skin prick tests and blood tests are grossly unreliable and are mere rough markers for what may or may not be an allergy and that if a child was able to eat the food without a reaction within 2 hours; then they were probably not allergic to it at all. Lil Bro tested positive on blood and skin prick tests for many other things such as corn, but we knew that he had had no allergic reaction on physically eating this and so could not be allergic to it. We were encouraged to continue to allow him to eat all the things he could eat without a reaction. We were told that the jury was out on exclusion as being the best course of practice and that clinical trials for exposure and desensitization were ongoing. That there was a possibility that exposure could actually help not hinder overcoming allergies.
It is amazing how little one can eat, if you have to exclude the list of food that Lil Bro was allergic to. The majority of dairy-free products substitute milk with soya, which was no good for Lil Bro either. Who would have known that meat pastes and pates usually contain soya? At home it was possible to concoct a meat and two veg type meal and we joked about his Chinese and Irish heritage as rice and potatoes were his main starch staple given bread and pasta were out of the window. It was travelling that was tough. But as I mentioned we were not going to let allergies hold him back, and we travelled widely with our suitcases stuffed full of oat cakes, tins of tuna and sweet corn; staples that we knew he could eat, if push came to shove and we couldn’t find anything for him. For his first birthday, as I couldn’t fathom how a cake could be made without flour, eggs, butter or milk, we bought a hefty joint of beef and wrapped it in a cake frill and stuck a candle on top. It was important to me that he was going to enjoy his birthday cake! Later, I found a decent recipe for a wheat, egg and dairy free chocolate cake that involved pureed prunes and his second and third birthday cakes were sorted.
As was foretold, Lil Bro outgrew many of his allergies. On an annual basis, we tested his allergies and if ever we were told there might be a possibility that he had outgrown an allergy, we billed our insurance company for a food challenge. The elation of overcoming the soya allergy at 2 years was only off-set by failing to outgrow his wheat allergy, but, slowly by slowly, the list of contraband food grew slimmer and slimmer. I watched carefully at the conduct of food challenges that took place in hospitals, and for a few items on Lil Bro’s list; I conducted food challenges at home. The sooner Lil Bro could eat a normal diet the better, and the annual NHS appointments that we had were not soon enough for me. If he could eat something, I wanted him to be eating it. Lil Bro still has an allergy to cow’s milk. This shows on skin prick and blood test, but from home food challenges, we know for a fact that he is able to eat milk that has been thoroughly cooked, although he still reacts to a few sips of a glass of milk. Home food challenges were not advised by the hospital, and I am not advising other parents do this (I am after all a doctor). In fact, I am frequently chastised by the hospital nursing staff “Why did I want to take the risk with a home food challenge?”, but the sight of Lil Bro tucking into a crème brulee, which is his favourite food, is enough justification for me. Why should he miss out? Lil Bro’s current allergies are now only peanuts, cashew nuts, pistachios, raw egg and uncooked milk. He enjoys a varied diet including all the nuts that he was previously allergic to: almonds, hazelnuts, pecans, walnuts and brazils. He has not a spot of eczema on him and only rarely uses an inhaler.
What has puzzled me is the attitude of some parents. Coming from a standpoint of having a child who could eat virtually nothing, and the immense strain on family life that this caused, I found it difficult to understand why anyone would want to inflict this on their families without strong evidence that it was indicated by allergic reaction. Yet many parents seem to be rushing to exclude vital food groups from their children’s and entire family’s diet. In the allergy clinic waiting room, there is almost a frenzied competitive element to the number of allergies your child has, whereas for me, I’d give anything to be the loser in that competition and have Lil Bro be able to eat anything he wanted. I can only imagine that some people don’t enjoy food as much as I do. For me food is life. People that enjoy food tend to enjoy life, and I intend for Lil Bro to enjoy his.
I am not an allergy specialist, I am just writing about my experience, but please check out the Sense about Science website for sensible allergy advice.