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.

Mine is in Gloucestershire - she is a qualified Nutrionalist as well as a Kneisologist - we were going to the Allergy Consultant who was having trouble with ds bloods and diagnosing what his allergens were - the Kneisologist worked it out in about half an hour - tested alternatives and recommended foods so that diet was balanced - MUCH more accurate, and far less invasive than bloods etc - plus the fact she diagnosed the anemia in the first place - and said it was severe - which the ferritin level later confirmed - I have no faith in the GP's/Hospitals as far as allergies go - they do their best but have a limited range of tests and help to give (imo)

Sorry to hi-jack the thread Chandra, but what is a Kneisologist? What do they do? How do you get referred to one, and what do they cost? Sorry for all the questions!

Kinesiology test for intollerances or allergies and imbalances of minerals and essential nutrients through muscle strength testing - sounds very strange and I only became a non-sceptic after having it done on myself and my children who have allergies (found out dairy)

This explains it really well and has a link at the bottom to the Association of Kinesiology so you could find one in your area - the article suggests finding one qualified in Nutrition also.

www.whatreallyworks.co.uk/start/articles.asp?article_ID=98

There are none anywhere near us but I have family in Gloucester, so could visit the Gloucestershire one whilst there. Could you tell me who you saw fimac1?

Call Jackie Norton on 01531 635635

She is retired now but sees former patients, she will be able to refer one for you to see, and probably near to where you live - she is fairly senior, and trains other practioners so hopefully will know someone in your area

Good luck - is it for you?

(PS sorry for semi-hijack)

WOW! Thanks! I was not expecting so many messages Thank you.

OK, I have calmed down, spoke to the doctor today and here's the update:

According to the RAST test, DS has a severe allergy to: dust, mites, cows milk protein, fish, nuts and above all to soya and egg.

We have decided to ignore most light to medium intolerances and only avoid the grade 4s unless we see a big change in DS health for the worse. So, added to the list above are: Lentils, mustard, kiwi and Sesame seeds.

DS is going to have an iron suplement as well as an allergy prevention treatment which would be basically having a tablet a day.

Dr expects that in 8-10m the allergen antibodies would be nearer to an acceptable level (currently DS's count is 7x the normal).

I am expected to convert most of my house to a monk's cell, no curtains, carpets, furry toys, pictures or anything that may catch dust.

Need to find a new house for my dogs (snif) unless they have minimal contact with DS .... long shot but I'm going to try to find them a foster family to spend the winter with. Once summer is back they spent most of the day in the garden so they should be fine and maybe DS's defences will get better by the time. Obviously if the dogs (and the foster family) are very happy with each other, I would just let them go.

About the good news, DS is not allergic to glutten! yipee! so he can have pasta, normal bread, etc . I feel relaxed just to be able to forget about the long list of intolerances for a while. Obviously we will need to adapt our food and the way we cook it. So, I am going to take the offer of those who offered their knowlege about "free-from" recipes so, if you know of any child friendly easy to cook recipes which doesn't contain milk (or its derivates), egg, soy, fish, nuts, lentils, mustard, tomato and sesame seeds, please let me know.

Thank you again, you all have been very very very helpful.

hello chandra, im sorry you are going through this with your ds.

My dd is allergic to All Dairy,Soya,Wheat,Gluten,All Citrus Fruits,Tomatos and Chicken, so i can identify with you somewhat.

We have got tid of carpets,throws,installed humidifiers for her asthma and eczema,i steam clean as often as i can as well because that kills pollens and dust mites, so all in all its a non stop tiring routine that has to be done to make your childs health better-but you will already know all this.

I buy frozen food from sainsburys and get food on prescription from the doctor-bread,pasta,biscuits,cake,pizza bases, and crackerbread.

My dd eats things like :
Bananas on Toast
Stew
Meat and potato pie made with terence stamp flour for pastry
pasta with vegetable soup
jelly
sausage and mash
egg replacer to make scrambled eggs or omlette and i put ham in that and serve with a bit of salad
grapes
crispbread with Pure spread-the sunflower one
butternut squash
sweet potato-lovely roasted
bacon on toast
sausage on toast
and plenty of vegetables
and very occasionally sweets-the jelly type ones.

Hope i dont sound patronising-just thought i,d let you know what i do in a similar situation to yours.

HTH

jenk1, could you tell me more about steam cleaning? could you use it on wood? where do you get the egg replacer? have you found a good subsitute for milk in cooking? we use something that is called Tiger White but, although DS will have it if he's half sleep I can't imagine a nice dish made with it. Any suggestions?

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hello chandra, yes i do steam clean on my laminate floors but only because they are a very solid thick waterproof kind, we had the cheap one from B and Q before and the water from the steamer caused cracks in the flooring.

I got the egg replacer from a website recommended to me by frannf-called goodnessdirect.co.uk, they do all sorts of food for allergies, i bought dd some chocolate smarties from there!
i have used rice dream as well but the milk i use in cooking is nutramigen which i get on prescription, you might need a dietician or paediatrician to get it for you as GP,s dont like prescribing it as its so expensive.

I use pura sunflower margerine and make toast with bread-again on prescription but you can also buy it or make it yourself, lakeland limited sell gluten and wheat free mixes which seem ok.

please feel free to ask anything else as i understand what you are going through-its very hard work

HTH

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Chandra, I don't believe I saw rice on your list. Could you use rice milk in cooking?

Hi chandra i know you have lots of messages but just wanted to lend my support as you have always helped me out on my crises on here. I also have a tin of nutrimigen if you would like it. My ds hates it cant get him near it so its yours if you want it. big hugs and cuddles your far more knowledgable about these things than me. but were all here for you. big love donna

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chandra, it is nice for your ds to have a few cuddly toys and things - if you put them in the deep freeze for a couple of days the dust mites will die. then wash them to get rid of dust. then just keep chucking them in the deep freeze every couple of days during the day and they should be fine for him to sleep with.

this is also a very good thing to do with pillows - you really want to keep his pillows mite free because his eyes and mouth etc are in contact with them for 12 hours a day. so buy a new one, and just freeze it every couple of days!
x
good luck

Thank you for your messages, they are helping a lot.

I will try the rice milk in cooking, is there any substitute for cheese? We have decided that in order to insure DS eats properly we should all have the same (rather than having a meal for adults and a simplified version for DS), so we have had our first free-from-all the list and it's going well.

Meggymoo and Donnacb, thanks for the offer of Pregestimil and Nutrimigen, please excuse my ignorance but (hides in embarrasment)... what are they exactly for? DS milk allergy doesn't make him sick but bloated, puffy, passive and constipated so we were never prescribed substitutes as nor me or the doctor identified a problem with it, we didn't know how bad was the thing until we removed cows milk (in its liquid form) from the diet. So never got any prescription for something of the sort. But if you think they can help the cause, thank you very much

Spod, DS had an Elisa test for intolerances, I'm not quite sure about the accuracy of this sort of test, specially after DS's new tests result (RAST test): In the Elisa test he appeared to have a grade 3 intolerance to glutten while in the RAST he shows to be fine with it. However, the Elisa test showed milk as a big offender and the RAST test has confirmed it. I'm not quite sure if I could recommend the Elisa test, it is the only test easily available privately but I'm not sure how accurate it is, and it may bring lots of innecessary stress. As you may be aware from other threads where I was questioning if I should take DS to the VET, I was offered an intolerance test for my dog and the dog ended up having an Elisa test by the same company as DS's. What has ruined my faith in the Elisa tests is that it showed to have a slight intolerance to turkey and no allergy whatsoever to it... I fed her a tiny bit of turkey the other day and within 3 minutes she just colapsed and started vomiting, and keep vomiting for a couple of days [puzzled emoticon], I can't understand why the Elisa test didn't pick up such severe allergy.

PPH, I'm already planning to change our kitchen in order to accomodate a bigger fridge (since DS can't eat most tins anyway), your suggestion definitively aids the cause I have already given Tubby a good wash and, as soon as I have more space in the freezer, he is going in!

How about goat cheese?

The advisor from the fist test told us that considering he had a grade 4 intolerance to cows milk it was very likely that he could not have goat's milk either, unfortunately he didn't had a RAST test for cows milk so I really don't know.

Sorry, RAST for goat's milk. Stupid of me not to request it... it would have made the things sooo much easier.

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There is a dairy (& gluten FWIW) free cheese that you can get. I got DS some in a biggish Tescos the other day.

It was alright for grating, but didn't taste remotely cheesy. DS loved it though. I didn't try cooking with it.

I won't be buying it again though because I'm not convinced it had any 'goodness' in it, although I probably should, just because DS liked it so much.

It is a lot easier when you're all eating the same meal isn't it. We've started to do this with DS whenever possible. It also stops him asking for what we have got, and us having to say no to him.

I have a friend with severe lactose intolerance, but she can eat certain cheeses. I think unpasteurized?

Thanks for that Meggymoo, you are so kind. I have checked the info about Pregestimil and unfortunately it has soya oil in it so DS can't have it . But thank you very much.

BTW, I noticed from other threads that you have very sensitive skin, I have one or two new bottles of Balneum (it's a bath oil for people with very sensitive/dry skin/eczema) that DS can not use anymore as they are soya based, if you think they may be of help, please let me know and I will send them to you

Thanks for that Laura and Jaberwocky, I will look into it. The doctor explained that DS has a severe allergy to milk and therefore should not have yoghurts, cheese, etc. However he mentioned DS was fine with cassein (strange, isn't it?). I'm just waiting to have the printed document with all the correct terminology spelling in it in order to start some serious internet searching.

chandra - bread has milk in it i think so be careful.

sorry to hear about all the allergy probs - but i can second fimac's kinesiology definitely worth a visit