May I weep a bit here about DS's new test results? :-(

[Chandra]

Well, the title says it all, I'm feeling pretty miserable, we have just had a call from the doctor to tell us about the latest allergy tests of DS. Forget about nuts allergies, as we have already assumed the idea of one. DS had intolerance tests which I hoped were not very accurate, now, with the new diagnosis, my hopes have just gone down. Apart of being intolerant to most things all people eat, now we know that he is also allergic to more things. I'm stressed just to feed him as I never know if he is going to react badly to something he was oK with a couple of weeks ago, he is having reactions to food he had always being fine with .

The doctor has also said that DS has anemia, we have tried to avoid many foods that cause reactions that obviously he has started missing up in nutrition, and there's no way we can get an appointment short term with a dietitian or anybody who can throw some light in how to feed him well. I'm very sad, I know lost of people are far worse than he in terms of allergies but I can't stop feeling bad about what he is going through.

Soapbox, DS had contact allergy to tomatoes (just as you describe), it got better though from time to time it has a relapse, I'm wondering if there's something else that is causing it, I'm suspecting soya or should I say it should be soya (results today shown a severe allergy to soya...) [Bumps head on keyboard]

bummer chandra! sorry to read about all the problems with allergies your ds is having. poor little him (and poor you)

Louli, great to hear things are getting better, it gives me a lot of hope. I guess we need to start the container thing asap and stop trusting that we will be able to discriminate between things he can/can't eat as there are always some nasty suprises.

We have gone the private route though we had to go out of the country for that, as there were not allergists in the north of England who could see in less than 3 yrs. At the beggining I thought my GP was a bit... useless, now I see he has tried and tried but there are simply not enough specialists here not even if you are willing to pay the bill. Though, still can't undestand why he couldn't refer DS to a doctor in London...

Soapbox, I will go to Sainsbury's tomorrow to see if they stock that range here.

Hi Chandra, yes please do come back and we'll all try and help you with some recipe ideas.

Don't worry Cod, in all honesty I have not even heard the word millet before I saw the report saying that was one of the few things he was tolerant to.... though maybe the results don't show intolerance to it because he had never had it before the test so no chance he had antibodies to it. The list of things DS can eat is so ridiculously small that even I find it difficult to believe is right ... so, don't worry.

Chandra for a long time we suspected tomatoes but it isn't getting any better, so now think it must be something else!

I am very lucky to have a friend who is a GP who is a bit disillusioned with being a GP and is now crossing over to dermatology. She has given me some good advice so far and has given me the name of a consultant who she thinks it would be good for DS to see. So I just need to get my act together now!

Poor DS though - he really does look a complete and utter state, scabby red eyed and with an awful facial twitch where he tries to stretch the skin around his mouth where it is all scabbed over and tight

God I'll be weeping with you at this rate!!!!

Oh poor you and your poor ds.

Soapbox, that sounds bad, DS tomato allergy only affected the places the tomato touched but what you describe is definitively worse. Do you know your GP can bypass the specialist and order prick tests directly if the allergy is severe? Tatt posted somewhere the memo from the Parliament specifying this, if you have not seen it let me know and I will try to find it for you.

Thanks Morocco and Aloha

Chandra, I had allergy testing some years ago and reacted to most foods. I was appalled wondering what in the world I would eat. The clinic explained to me that I could try a food rotation diet where I would only eat a food that I was sensitive to once every 4 days along with undergoing allergy shots. Since I was an adult when diagnosed that may not be the case for one as young as your ds, but I just thought I might mention it.

Thanks Jabberwocky, we are trying to rotate the less offending items atm. It definitively seems the way forward. How long have you been doing it? how difficult has it been? I'm thinking in organising an "aproved" menu for the week and repeat it every week until things seem a bit better.

Will he grow out of them at all, do they think?
So, so difficult for you. Millet! Terence Stamp does bread made of funny stuff and you can buy it on the net or at Sainsbury's.

I think that things will get better with time, my first concern atm is trying to get him through this stage without major draw backs.

Chandra - this sounds really horrible for you, and I'm not surprised you are so upset.

Can he eat oats?
Or cornmeal? Cornbread (American style)is good, and v easy to make. Is polenta made from cormeal, too?

Can he eat chick peas? Gram flour is made form chick peas...

A friend of mine fed her baby on millet, and makes loads of soups and stews with it - it's nice.

But it must all be v bewildering and frightening, and I'm really sorry about the dog, too.

chandra I'm really sorry you're going through this, it sounds terrible.

Your gp can take blood to check for major allergens but that will not help with food intolerance, for that you need to see a consultant. Your gp can refer you to a doctor anywhere in this country if you are willing to travel there. They don't like doing this because of the way it impacts on their budget but they CAN do it. If you are prepared to pay there is no budgetary issue - however some of the good allergy consultants don't see private patients, only NHS patients. I have heard of people in London and Cardiff who take private patients although I'm not too impressed by what I hear of the Cardiff one (didn't refer patient back to NHS for repeat testing).

Is your son intolerant of dried fruit as that is high in iron? He may not be able to take the preservatives used on them and there is often a cross contamination risk. How is he with lamb, I forget but that is the meat used on most test diets.

There is a society for Nutritional Medicine, I'll google and see if I can find it, whose doctors might be able to help.

This is the webpage for the British Society for Allergy, Environmental and Nutritional Medicine

They are doctors qualified in allergy and nutritional medicine. I don't know if they will give you contact details but its worth a try. They will only accept you with a referral but most consultants who do private work will find a way around this for you if your gp is difficult.

www.jnem.demon.co.uk/

Although he isn't a consultant the doctor who runs the surrey allergy clinic seems very well informed and they certainly see private patients.

My initial diagnosis was about 10 years ago and I no longer consciously work on a schedule of eating but just try to kind of be aware not to eat the same thing too often IYKWIM. I was not a really good patient so after the first 6 months or so I kind of started to wing it. I do think it's a really good thing to try as you can at least attempt to expand his diet gradually. Big hugs on this one. Allergies are so, so terrible.

Chandra sorry to hear this news. Hope you had a good cry to make you feel a bit better. I really feel for you and your ds. How are you coping? Is he wanting foods that he has had but can no longer have????

Chandra

My ds has got allergies (yeast and milk) he has been seeing a Kneisologist who when testing him said he was VERY anemic - she wanted to go and get full blood tests done - while waiting for a hospital appointment I had him on an iron supplement from the health food shop (which really helped - actually had a appetite for the first time!, and energy) the blood tests came back with his Ferritin level being 14 (should be 250 or above apparently) after 6 month course of hospital iron supplement it was only up to 17, they now think he has an iron absorbancy problem and are thinking of sending him to a Hematologist - He has been acting 'anemic' again even on the iron son he went back recently to see the Keisologist, she has given him a acidophillus supplement (and a sugar free iron one) and he is almost 'better again - I know this is a bit long and I don't want to hi-jack your thread but wanted to say that low stomach acid can cause allergies and also can lead to anemia so might be worth looking into?

John Briffa - the Health writer for the Observer has done an article on it in his book, Ultimate Health, which was really interesting and the fact that the acidophillus helped ds makes me think it is his problem - apparently they can check at the hospital for absorbancy and low stomach acid - am going to see whether my ds could be tested

Good luck

chandra, I've sort of lost touch with your story after (ages ago) you were asking for details of doctors you could see. So who has done these tests now?

With reference to the low iron, while you are waiting, you can give ds Floradix. It's a fantastic liquid iron supplement (with other vitamins) that I think (check on the bottle or ask the pharmacist) is suitable from age 1. I took it after trying to take iron tablets and failing horribly after they mucked up my digestion and made me feel worse. Floradix is made from natural plants and is very kind to the tummy.

I'm afraid we had around 6 months where dd could only really eat certain vegetables and meat and I became very proficient at cooking casseroles - just basically meat and the vegetables she could eat. Pour in a tasty home made stock and they are actually quite nice. It's a very limited diet though - poor you.

What a nightmare this is for you, Chandra. I don't have anything useful to say about the allergies but I wondered if you knew that there is a range of nutritionally complete liquid foods for people who can't eat in the usual way. Fortisip is one brand. I have no idea of the ingredients of these drinks so they may not be suitable for your ds, but if they were, they might be a stopgap measure in helping keep your son fed. Best wishes.

Hi Chandra

Just sympathies, really. Two of my DS's are unable to have milk / dairy, and i can't have milk, bread, kiwi, and an ever growing list of things. I'll be eating something I've eaten a hundred times before, and then my mouth ulcerates and swells and that's it! Usually after I've had a cold or ful, but the allergy never goes.

Have you joined one of the allergy support grups? That might be good for your little one too, as some have children's groups- this website seemed useful, but there arelots about to google.

here

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