Hi
Just to say I TOTALLY identify with all this frustration, having been sneered at by the paediatrician, the allergy nurses and the school nurse in my time. I too work in the NHS, and am ashamed of the (lack of) communication skills shown by the service every time I have to use it. My son had all the symptoms of food intolerances since he was weaned, vomiting, urticaria, oral oedema etc but it was a nightmare uphill battle to get taken seriously. Had blood tests taken when lived abroad, which confirmed reactions to a number of non food based things, mainly animals and pollens. We were about to do prick testing, then moved back to Uk and started wading through treacle. Child has severe reaction to fishpie. GP refers to allergy service. Wait 6 months for appointment. Take day off. Get to hospital. Paediatrician asks if I have brought samples of food for testing. No, no one had asked me. Go away. Wait for new appointment. Lecture from paediatrician on child's diet - I was so worried about reactions I stuck to tried and tested (but good quality) foods - was told parents like me were in danger of malnourishing children. Skin prick testing with fish/shellfish lovingly selected by me from various types at fishstall. Specialist nurse tells me it stinks, the doctor had no right telling me to bring it, and she cant stay in the room as she feels sick, and she goes. I look at my small son, whose eyes are streaming from being in the same room as the fish and want to cry. The tests come up strongly positive to fish/shellfish. Paediatrician is no longer in clinic to discuss results. Nurse says just to get on with life and avoid these things, no treatment except prevention (not what the docs told me abroad). I ask about epipens; she tells me they are only for peanut allergies, and anyway are not suitable for people like me as I work (bad mother), which means someone else minds my child after school, and all adults would have to be trained in epipen usage, which is too much to organise. Get home, wail. Encourage child to try some dried fruit for first time, after paediatrician comments re diet. Child promptly has massive urticaria and swells up and has to have steroids at GPs. The GP then began to listen. Before then, rashes etc were always dismissed as a virus. GP does RAST tests. Allergic to peanuts and citrus fruits. He tells me to avoid these. I ask for more tests to see what else child is allergic to; he resists. I sit there, he gives in, get referred back to clinic of doom and get given an Epipen on temporary basis only until results in, just to get rid of me. Eventual trip back to dreaded clinic; inevitable sneering from doc, who dismisses GP and says the fruit swelling incident was just a virus, and I am clearly wasting his time, gets nurse to train me in epipen, which he insists i dont need (training takes 30 seconds), she performs prick tests for orange, peanut, soy, wheat and egg , which all come up negative. So now I have RAST tests saying one thing and prick tests saying another, but I have the epipen, and I feel better. Two years later, child changes school, and new school nurse says that policy is straight to epipen for allergic reactions, no antihistamines, which is contrary to the advice I have from the GP. I ring to protest; she is awful - condescending, patronising and adamant, and all of a sudden I remember all the struggle I had had. I try to tell her my experiences and she says she doesnt believe me, her husband is a GP and they know everything. Much more besides. She wont budge unless I provide written medical advice re antihistamines. So I self referred to a private allergy clinic, and it cost me £140 and was a 4 hour drive, but the man was wonderful. He actually listened to me!! For half an hour!! He retested my child, he confirmed the fish allergy and the need for an epipen because of the severity, and he told me he thinks my son has intolerance to histamines which occur naturally in food, and which normal people can break down but people like him cant, so if he eats histamine rich foods out come the rashes, swelling etc. On the list of histamine rich foods are all the old triggers - fruit, soy, orange juice etc- we have had problems with. And an epipen won't work in that type of reaction beacause it is not a true allergy but an intolerance. He needs the anthistamines. So yah boo sucks to the school nurse, and I feel great. I feel I can calmly manage my son's diet and parent him properly. When he itches during a meal, he gets antihistamines. Sorry for all this - all I meant to say before I delivered this rant is that lots of us have been there!