Wednesday, 7 December 2011

Our Early Allergy Story.

Our Early Allergy story,

I have four children, who are now all in their teens, our third child, has multiple food and environmental allergies.
 He was born a respectable weight, and displayed the three main symptoms of food allergy before he was three months old. However, the medical profession’s understanding of allergy at the time of his birth 15years ago was patchy or totally unaware at best. That is still true for some today, depending on a GP’s and health visitors experience with patients with allergy.
The three main symptoms of an allergic infant, who is fully breastfed and under three months are, eczema, poor sleep pattern, and poor /slow weight gain.
 My son was fully breastfed, he had very dry skin ten days after birth, and by day fifteen we came home from boots the chemist with two carrier bags after being diagnosed with eczema.
 He was unable to sleep, and as my eldest child had colic I thought that he had it as well, showing all the signs of tummy ache that small babies often have.
 However, he was a tired baby, who scratched at his skin, and as the time went by, he slept for twenty minutes a day, and about two separate hours a night. He never slept for the four solid hours that most new born babies do. Of course sleep and weight gain in infants is linked, and although breastfeeding was going well, I was at a loss to understand his slow progress. At the time I had one son in afternoon nursery and a second son in morning pre-school. I was to put it mildly, rather tired!
Doctors and health visitors put everything down to the eczema and I concentrated on that, learning all I could about the routines, and how to apply the creams to stop the itch scratch cycle, and keep him cool and soothed. However, I think I knew something was wrong, the months passed, and the ‘colic’ didn’t disappear, still screaming at night and day by 5 months.
 By 7 months a health visitor and doctor asked me to keep a diary of the times he woke up during the night. By that stage if I got up past 8 times in one night I classed that as a bad night. They seemed shocked, and suggested I try a sleep clinic.
 I was on my knees with exhaustion and so we went. I was persuaded to try the controlled sleep method, something I had tried with my eldest and it did work very well for him. However, a child covered in eczema cries, gets hot, and starts itching, and the longer they cry the hotter they get and the more painful it is for them. I had to use cotton wool and warm water to remove his cot sheet from his bloodied face and neck. The resulting eczema flare up compounded my guilt. My eczema routine was all body moisturising about 5 times a day, with flare ups going up to 8 times or more.
 By 9 months we were referred for ‘wet wrapping’ by the GP, and suddenly he skin seemed a little better, (linked to time of year) and he slept for four hours for the first time.
 His sleeping pattern started to continue to match a new born, and he started to look better. Then by 12 months something happened to change all that, weaning was still a very slow affair, and started at 6 months. He still mainly preferred breast milk and only took small amounts of food, chewing well etc.
 I took older son to school one day and my hubby gave him toast with smooth peanut butter. I came back to a quiet baby, with glazed eyes, bright red skin, covered in white hard hives. His GP said it was a mild allergy as his throat was unaffected, of course this was totally wrong, but we were suddenly on a huge allergy learning curve.
 When he was 13 months, I tried giving him scrambled eggs, (still totally allergy unaware) in order to find something high fat to help him gain some weight. His symptoms were instant and horrific, violent vomiting and screaming and his bowels emptied with force (a serious sign btw) and were his vomit and poo touched huge hives erupted, and he went suddenly quiet. I gave him a huge dose of piriton, and washed him. Of course I should have called for help; I thought he was just exhausted after the vomiting. He recovered, and we were very, very lucky that day.
 My GP referred him to the local pead, who said his reactions were mild to moderate, and to just avoid all egg and peanut, and that he couldn’t have a epi pen because they were dangerous for infants under 25lbs (advice that was incorrect in so many areas…) but she did give me instructions on how to use a epi pen, which we would be able to have when he reached the magic 25lbs.
I went home and rang AllergyUK and spoke to a nurse, who sent me a letter, which explained that our son was at risk of anaphylaxis and did need an epi pen and referral to an immunologist. It took my GP two weeks to find one. We were sent a letter explaining that our first appointment date would be given between 8 months -18months.
These days London appointments only take 8-10 weeks which is a vast improvement. After his first appointment, we came home with a list of his allergies, peanuts, tree nuts, egg, dust mite, tree pollen, and hay fever. We were given a leaflet on dust mite allergies, with the doctor’s sage, if unhelpful advice to not vacuum if our son was in the house.
We came home and in the months that followed blew a pile of money on wooden flooring, chest freezer to freeze teddies overnight before washing, leather sofas, good quality allergy bedding, and to our joy, his skin improved and he slept and started to put on weight on a limited diet. One day a local nurse rang up about the wet wraps, but it was too little too late.
We found our own way to control his world as much as possible. The oncoming year brought new allergies that were discovered, so we were given epi pens by our gp and by the time we went back to London they were very surprised at the ever growing list of allergens and his symptoms, and were happy that he had epi pens. He didn’t reach the magic number 25lbs until he was nearly 3 yrs. old.
Our son followed the ‘allergic march’ growing slowly out of his eczema, and developing higher severity environmental allergies.
 As he had an ever longer list of allergies, and we were told that he might grow out of some, but not all , so we have brought him up to try and cope with his allergies. Teaching him in small steps to manage his own allergies, and this is still an on-going process.
 The impact on the family, and his life has been huge, every social occasion has food, and family trips to restaurants, days out and travelling have to be planned ahead to a vast degree. The emotional strain of being a young child and teen that has had many allergic reactions and has required his epi pen three times this year so far is huge.
 He is coping with a burden that an adult would find difficult.
By the time our son was two years old I was running a local allergy parent support group, was a member and volunteer for Allergyuk and the Anaphylaxis Campaign. My health visitors passed on my details to other parents struggling to cope with infants with eczema, and sleep problems and allergies. I spent time visiting these mothers, and passing on leaflets from the allergy charities. As time went by I had another baby and with all our boys at school, I organised open evenings with guest medical guest speakers, and raised money at carnivals. I worked part time with the campaign with teenagers, and started giving allergy management presentations to school staff, parents and school nurses and early year’s students at local colleges.
 This was a natural step for me, as my work background was in senior management roles in various child care establishments. I have given presentations on environmental allergies to members of the press; our family has appeared on documentaries, BBC breakfast news, sky news live, magazines and newspapers.
 I am currently a just starting my 2nd year of my early years degree, and work part time in a preschool, and still volunteer for the allergy charities, both local and national. I still support parents by e-mail or phone, as it’s important for parents of allergic children to be in contact with parents that few steps ahead of you, and support each other.



Sarah chapman.

8 comments:

  1. I had almost the same experience. You are not alone.

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  2. Thank you for this post. I had a similar experience, except that weight gain was not a problem for my daughter. She has always been on the high end of the percentile for weight, despite having multiple food allergies. You'd think GPs would know more about food allergies, all these years later, but unfortunately, that is not always the case.

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  7. Sarah, thank you so much for sharing your boy's story. I cannot believe they did not give him an Epipen after the way he reacted to egg. It also took a long time for us to see a specialist (3 months) after our trip to A&E when our toddler was 6 months old (hives and she 'blew up' after eating a small piece of bread). Multiple allergies are tricky. She is not at school yet (only 20 months old), but the prospect is daunting. People are not trained to be around children with life-threatening allergies.

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