DD Getting Worse Reactions - Help!

[sylvm]

I have posted here before about 14 yr old DD and her suspected dairy allergy/intolerance. GP got a rast test done which showed that she wasn't allergic to cows milk but had very high levels of non specific allergy. He has referred to a paediatrician specialising in allergies and we also have an appointment with a dietition at half term. We have kept her off dairy and then tried reintroducing a tiny it produces a far more marked reaction each time. So we decided no more dairy trials for the moment. I am concerned about calcium etc so have tried using soya milk/creem etc and after no reaction initially we have moved on to a very bad reaction last weekend which she is still recovering from. So I now have to assume she is reacting to soya too.

My concern is if she eats something by accident (and fortunately she is very sensible about this) the reactions are getting worse each time and where will it stop. Has anyone come across a worsening reaction each time? I'm not sure really what I'm asking here, I feeling really down about my poor girl at the moment - I think we've reached the stage of her having to take her own food wherever she goes but we've still made mistakes ourselves with what's in stuff. I know some of you/your children are extreme allergy sufferers - how do you cope?

if her problem is milk it may be lactose intolerance rather than milk allergy. Allergy means an IgE response but lactose intolerance means she doesn't produce the enzyme - lactase - that digests milk. You can buy lactase tablets in larger branches of Holland and Barrett and from internet sites. You may need to ask in H&B as it always seems to be in the most inaccessible place. There is a breath test for lactose intolerance but gps seem reluctant to do it - and they don't seem to realise what lactase can do. Don't want you to think these will allow her to have much milk but they might mean she'd be OK with accidental exposure/ small amounts in food. They might make a tremendous difference to your life.

If her reactions are anaphylactic joining the amaphylaxis campaign would be a help. Even if she isn't ask to attend a meet up if there is one anywhere near you. You don't have to be a member to go and there will be families there with multiple allergy problems.

You cope by reading every label in sight and carrying medication at all times. It gets easier as you get used to it and find what products you can tolerate. Good luck.

no she is not lactose intolerant. This was the first thing I tried and the lactase enzyme made no difference whatsoever. I am just beginning to realise how much soya there is in everything - including bread. She has not reacted to this in the past but she seems to be getting more sensitive by the day. She does not have breathing problems, it starts off with stomach ache then sinuses and head start hurting and she has no energy and feels constantly bloated. She has hardly been able to drag herself around the last few days.

when is she seeing the paed?

the 'very high levels of non-specific allergy' - does this mean that she has an allergy to something and they do not know what it is yet?

the RAST tests - are those the blood ones?

in your shoes, I think you need to write down EXACTLY what she is eating every day and any other exposures to common allergens (cats, dogs etc.) - they may ask you to do this anyway

in terms of worsening reactions, I know I have some sort of problem with milk. When I get hayfever in the summer, the milk problem gets worse probably (I imagine) because I'm already having allergic reactions to something else and the milk reaction then gets magnified (iyswim). I wonder if this is happening with your dd. You just haven't found her main allergen yet.

Hi Fox in Socks - yes my understanding of "unspecified allergy" is that they don't to what - a rast test only tests for the one thing and they tested for cows milk allergy and that was negative (although I am told that intolerances don't show up). The rast test is the blood one. I think you may well be right about a reaction to one thing magnifying everything else. We don't know when the paediatrician's appointment is yet - if I don't hear next week I will chase it up. We do have a dietitian's appointment at half term but I'm not really sure what good that will be when we aren't completely sure what she is reacting to.

poor girl, sounds awful. I would definitely chase the appointment up. The RAST tests are the gold standard allergy tests I think (dd had these done). How annoying that they didn't test for other allergens.

The dietician may well ask you to do a diary. I wonder if your GP could arrange for her to have more extensive blood tests because I imagine your paed appointment may be some way off.

Hi, my dd recently had RAST Tests for the 6 most common allergens among which was soya - so it's definitely worth asking if she can be RASTed against soya and the other common ones (wheat, milk, soya, peanuts, eggs, fish). If you're not happy with the way your GP is handling it, I'd think seriuosly about moving GPs if poss.

Keeping a reactions diary helps to track patterns. Also reading labels carefully is important. Since I found out about dd's allergies we have v. little processed food as it's easier to track her reactions if the food on her plate has comparitively few ingredients in.

BTW soya is in so many foods from some breads, tomato ketchups, chocolate...it's also in a large proportion of wheat free foods (which is a pain for me as my dd is allergic to both!)

Good luck.

Well, I was going to chase up paed appt to day and it came in the post this morning. Tuesday of half term week so not bad at all.

My daughter recently had meningitis, and we believe her immunity was so low for her to get this - we visited a Kinesiologist who discovered that she has dairy intolerance, and was dehydrated - both can lower immune levels and bring disease/reactions. I really recommend Kinesiology as an alternative, natural therapy - you can find out about it on the web.

Rita
www.chilledparent.com

good luck sylvm - let us know how it goes

hi sylvm
If I were you, I would take her off wheat (eg gluten) and soya). Gluten often will not show up as an allergy, but causes indireclt allergic symptoms, inflammation, autoimmunity and tons more. Often you will find that you will be asked to keep a food diary anyway as not many tests will actually show up gluten as a cause and the only proof you might find is the positive response to diet.
There is a terrific source called the gluten file, where you can find links to papers about different illnesses/conditions related directly or indirectly to gluten.
My son has gf diet on suggestion of one amazing neurologist, who opened my eyes after 14 years of complete despair.

Well we saw paed yesterday and dietition today. Paed is arranging skin prick tests to milk, soya, inhaled allergens such as dust mite, dog/cat hair plus grasses and pollens. He did say he was surprised that if she has a true allergy that she hasn't had any rashes or problems with breathing. We will see what happens when the tests are done.

The dietition was worse than useless. I was telling her stuff she should have been telling me. She was obviously completely overwhelmed by having a vegetarian who is reacting to milk and soya and didn't know what to suggest other than supplements. When I said I was concerned that it was difficult to work out what some of the additives in these actually were she didn't have any ideas at all. She also suggested tofu!! I think I will wait till DD is tested and then go to a nutritionist.

could be a wheat/ gluten problem. I'd probably try 2 weeks without them if you have time to do that and reintroduce gluten before the appointment for any further tests. There's a blood test that isn't 100% accurate but might be worthwhile for gluten. She has to be eating gluten before the test for it to work. It would be a very difficult diet but you can get rice and corn noodles now and rice or buckwheat flour.

The other thing is dehydration - could be causing some of the symptoms and she may have more than one problem. It can be difficult to spot mild dehydration but encourage her to drink extra water anyway.

Have you read the allergy bible?

She is already off soya. She seems fine with wheat/gluten.