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The first few weeks with our first baby, Reuben, turned our lives upside down. He never slept for longer than two hours and he sicked up after each feed but mess and tiredness comes with the children. I assumed it was the same for everyone.
At about eight weeks, his scalp became dry and crusty. "Cradle cap" we thought, but none of the normal remedies helped.
Over several weeks the scabs spread over much of his face and torso, and his sores became infected. Reuben was obviously uncomfortable; we put socks on his hands day and night to stop him scratching himself. Our GP could not recommend anything that helped, so we were referred to a consultant.
It was tough. We were exhausted, like anyone with a new baby, but all the other new babies looked so pretty and smooth. People would stop and peer into our pram and say "oh dear".
We were promptly seen by the consultant and a specialist nurse . They listened to us, looked at Reuben and said yes, they could see the problems (severe infected atopic eczema), yes they had dealt with it before, and yes they could help. It was a joyous relief. The course of treatment meant that sometimes things were better, sometimes not so good, but at least we had someone alongside us who understood.
At about this time we tried Reuben with some formula milk. When he refused the first attempt, I assumed the problem was the bottle not the formula. But the second time I tried it (the second time of consuming a food is most significant with allergies) he was violently sick and started puffing up around his mouth and lips. I though it was odd, but (in ignorance) didn't know how serious it could be.
We rushed Reuben to the GPs, by which time he looked a bit better. He didn't need adrenaline but we were sent to hospital for monitoring. We were told it had been an allergic reaction and to avoid all dairy foods. From then, we started to investigate what allergies were all about.
Some time later we tried him on weetabix. He was violently sick and his facial skin reddened with something like nettle rash - so we took him straight to hospital again. Again they gave him some medication but he was soon back to normal. So now we avoided gluten and wheat in food.
Later on again, we tried boiled egg. This time he ate a bit but not much. Shortly afterwards I saw Reuben had fallen asleep on his front on the floor. I just thought he was tired but as I watched he opened his mouth and was sick in sort of convulsions, while asleep. When we picked him up, he was just limp and gasping. We gave him some antihistamine and raced to hospital. Surprisingly soon he was bounding around. So we avoided anything with egg in.
Reuben's eczema was a symptom of his allergies. As he was fully breast fed, his skin problems showed his sensitivity to the foods I had eaten. Now Reuben is on an exclusion diet of these things and, as a precaution, nuts and shell fish and his eczema is very much more under control. We visit the hospital fairly regularly for consultations and monitoring tests, to see if his condition has changed. It hasn't so far - maybe it will, maybe not. I now realise there are a string of allergies on my husband's side of the family. (I obviously didn't check his medical history properly before breeding!!)
I felt despair over Reuben's condition sometimes. Once when he was really small and just scabby and we didn't know why. Even though he looked so bad for only a matter of months, each day felt like ages. We prayed passionately for his healing and asked many questions why.
As we began to identify all his allergies I felt despair over how we could protect him and yet enable him to live a normal, not paranoid, life. So many of our standard foods were out of bounds
I have been bowled over by the acceptance of people. When we go to people's houses for meals, we offer to bring special food for Reuben, or to help out, but so often they just say "don't worry, we'll cater for him", and they do!
We were worried about Reuben starting school and being exposed to a new environment with new people - but the school seems geared up for such things and we're teaching Reuben the right things to say if he's worried in a situation - to express himself clearly, but not to be over-anxious.
A lot of prayer has gone into the situation but I don't feel called to pray for healing and I don't hold out much hope of him growing out of it. In itself, it's not a problem now , it's "just something" we live with. Many people live with other "just something's" every day. I pray he doesn't accidentally come in contact with something that would cause a bad reaction and that people are responsible around him. I do worry sometimes about other things he might react badly to (such as nuts or wasp stings),
I've had two more children and people have said "Do you want a boy or a girl .. or just as long as it's healthy". I learnt through having Reuben that, of course, I'd rather have an easy and predictable path, but really what matters is that my child is the person God made him to be - with whatever health (or other) challenges. He has been made with a certain personality and many traits, abilities and inabilities; I just want my child to be who he is, without hang-ups or inhibitions because of his diet or any related fears. That's one of the strongest things I've learnt - that each of us are made to be who we are, and God made us and loves us in that.
It is the uncertainty that is hardest - once understanding comes, it's easier to deal with. I had little experience with medics before this and learnt that if you do feel something isn't right with your child be prepared to be labelled an over-anxious parent in order to get an answer. As we found with Reuben's eczema, every symptom has a cause and it's worth demanding what knowledge the doctors have on why there is a symptom rather than solely accepting a medicine that takes the symptom away, masking the problem.
If you're trying to cope with an exclusion diet, I'd say just try to remain cheerful and positive. It is an effort, but it will become second nature after a while. We find that pre-prepared foods we can eat are very hard to find. Everything has to be fresh or homemade, so we're all eating more healthily, thanks to Reuben! Some foods are certainly out of bounds for us. I've found it impossible to make a decent birthday cake (by the time you've substituted the wheat flour, the margarine and used egg-replacer, the end result is nothing to celebrate!) But other whole realms of new foods are opened up - polenta, Swedish ice-cream, corn pasta, and Rice Crispie Cakes. Health food shops and specialist shelves in big supermarkets come into their own.
Talking through concerns helps; a useful contact may be Allergy UK, (also known as the British Allergy Foundation. They have an allergy help line on 020 8303 8583 They also offer information and advice through their website.
The most helpful book I have read on the subject was The Complete Guide to Food Allergy and Intolerance by Prof Jonathan Brostoff and Linda Gamlin.
A couple of loose definitions:
Food allergy - generally a prompt and distinct reaction to eating or touching a substance. A skin prick test shows a positive result and the immune system is involved in the reaction ; common reactions include bumpy or red skin rash, runny eyes and nose, vomiting, swelling of the throat and mouth area.
Food intolerance - generally shows a less immediate response with no positive skin prick test and the immune system is not involved. Common complaints with links to specific foods are migraine, diarrhoea, ulcers, hyperactivity, pains, nausea, depression.
Article Written by Gillian Andrews