I was moved to read your letter. Don't worry - you're not alone! I had similar difficulties getting my son's allergies recognised eight years ago.
I breast-fed Callum and it wasn't until we began weaning that we realised he was allergic to dairy. His lips swelled alarmingly twice in one week (first with baby rice and formula milk, then with baby yoghurt). I visited the GP, expressing concern that Callum seemed allergic to milk - he stared at me disdainfully at some length, then wearily told me to give him soya formula instead.
It soon it became apparent that Callum was sensitive to a number of foods - his symptoms varied from diarrhoea to projectile vomiting and hives.
I returned to the GP - a young locum this time - and again was given the impression that he regarded me as a neurotic mother. He actually said, ‘Do you know how RARE it would be for your son to be allergic to milk?’ An astonishing assertion, I realised in hindsight. However, I knew I had to stand up for Callum - I stood my ground and wouldn't leave his surgery until he referred me to the local consultant.
She carried out RAST blood tests and confirmed that Callum had a severe milk allergy. (Callum had been suffering badly from eczema all this time - we eventually realised this was caused by the soya milk and changed to 'Rice Dream' - which he still has today.)
On a subsequent visit to the same consultant she questioned us about Callum's reaction to a cocktail sausage: diarrhoea, hives and asthma. She seemed especially concerned about the asthma and told us this could be a symptom of anaphylactic shock. She reacted quickly, prescribing Epipens and sending us for further testing at Southampton Allergy Clinic.
Your doctor seems almost insanely complacent (and ignorant) about Mary's allergies. Perhaps you could emphasise her wheeziness and suggest it could indicate anaphylaxis? Hopefully he will respond to this. If not, maybe you could try changing to another practice?
Callum's skinprick tests indicated severe allergies to peanuts, all other nuts, eggs, milk and sesame. We later found out he was allergic to salmon and other fish and to baked beans (apparently related to peanuts); his soya allergy was also confirmed. He also had mild allergies to apricot, citrus fruits and monosodium glutamate. He seemed to react to penicillin as a baby so we've avoided it ever since.
He has also had related conditions: eczema, asthma and rhinitis. His asthma used to be severe (he was hospitalised several times) and had lots of steroids until about two years ago. Fingers crossed - he seems to be growing out of it.
We had several yearly appointments at Southampton Allergy Clinic. However, in the last few years these have been repeatedly postponed - apparently due to lack of funding. I heard a rumour recently that the clinic has now closed - but we won't go there - I get too angry about it.
I recently managed (after several attempts) to get our original consultant to carry out skinprick tests to check whether Callum's allergies have improved. The milk and egg allergies have diminished (they're about half as bad as they were) and - the really good news - the allergy to nuts has virtually gone! So we can try those foods in the supermarket with the nut warnings although we still need to be careful about peanuts!
This probably all sounds rather alarming - so let me tell you the good news.
Callum is a tall, healthy, active boy. He has always been very mature about his allergies and doesn't take risks. He prides himself on not making a fuss - as when when his teacher recently gave out mini Easter eggs to children in the class and he couldn't have one.
We used the Epipens a few times in the early days - each case was 'borderline' and he recovered very quickly. We've controlled his diet very well since then and haven't used them for about four years now - just an occasional dose of anti-histamine.
I used to worry that his condition would make him feel insecure and uncomfortable but his schools have been fantastic - they even took him away on a residential trip for three days last year, assigning him a teaching assistant at mealtimes to check he was OK - he thoroughly enjoyed himself.
He is a good swimmer, loves football, works hard at school, and has an average number of friends. He has never felt excluded by other children and is to all appearances a normal, healthy child.
Before I finish, I must tell you about a fantastic American cook-book I discovered recently: What's to eat? by Linda Marienhoff Coss with lots of milk, egg and nut-free recipes - the cakes and biscuits are especially good. She has also written a book called How to Manage Your Child's Life-Threatening Food Allergies which you might find useful. Check www.foodallergycookbook.com
I felt so moved by your letter - I remember how lonely I felt when Callum was small and it seemed that no-one understood what we were going through.
For a long time I was obsessed by his condition but now it is just a part of our life - inconvenient, but it no longer defines us. We just have to be a little more careful in our family. I hope you feel comforted to receive this. Please stay in touch and let me know how you get on. I would love to hear from you.
For Callum's thoughts on his allergy and how he copes with it click here
First published in 2007
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