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PostPosted: Fri Aug 27, 2010 10:22 pm 
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Joined: Sat Nov 24, 2007 10:03 am
Posts: 37
Location: Ontario, Canada
I'm truly at a complete loss as of what to do.

My almost 4 year old son is having some pretty interesting (and sad) issues.

I went to the allergist a few months ago, and since my son had had a few reactions, he suspected a preservative and or food colouring allergy.

He needed to order serum.

So before going back, my son began reacting to about 50 % of processed food. (hives, redness around mouth, clearing throat, rash around mouth etc etc)

So at his appt last week, I told him about what has been going on. I gave him a list of things that I felt he needed testing for (and they were odd things, like BHT, BHA<preservatives/synthetic antioxidants>, and another additive that keeps recurring (I think) is carrageenan and calcium propianate. I suspect multiple.

He did not have any serum for these things and wanted to do some research before I return. He did test him for sulfites, nitrates and MSG (all negative, of course, and I never suspected those).

The doctor was also not familiar with the items on my list. He told me he does not have a patient with these 'issues' and has never heard of 'this' before.

So I emailed a large hospital for children (the allergy dept) and told the clinical nurse of my dilemma, and asked if they tested for unusual allergies/preservatives (I do not suspect a colouring allergy, he can eat candy, I tried!).

The response I got was :

.. but I asked one of our Allergists to look into your question. We do not routinely do this type of testing because reactions to non-protein food additives are very rare and debatable in the literature. You do not usually test synthetic food additives on the skin because it is of limited value. If highly suspected then diagnosis is done by eliminations and challenges.

Some natural food additives are known to cause reactions. It is usual to rule out other diagnostic entities, such as idiopathic anaphylaxis, chronic urticaria, mastocytosis etc. The first step is usually to keep a detailed food diary indicating all foods and reactions....




Is this true? And if so, what the heck do I do now? He's starting school in just a few short weeks and I dont' even know what to tell them. Heck,I don't even know what to feed him (other than whole foods).

What is a natural food additive?

I was just hoping to just go in there and have his testing done and find a yes or no. I had no idea that that was going to be so complicated.

Okay, maybe this is a vent instead of needing advice, but I'm really flipped out right now.

And, yep. It's kinda like a game right now, I feed him a hope for the best..


Anyone been in our shoes before?

_________________
4yo ds: Finally!! Milk and Latex allergy. Preservative sensitivity. Asthma. Hay fever.
6yo ds: Hay fever, ADHD, asthma, penicillin, azithromycin, cephalosporin.


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PostPosted: Fri Aug 27, 2010 10:47 pm 
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Joined: Sun May 25, 2008 4:27 pm
Posts: 300
Location: Montreal
fourfallbabies,
Sorry to hear about this. It is always so challenging/frustrating when you or your child is having reactions to an unknown allergen. I know for sure that carageenan is actually from seaweed. It is a vegetarian preservative used instead of the traditional gelatin. I'm not exactly sure what the other preservatives are extracted from.

The one thing I would advise is to keep it simple. Since he's starting school soon and until you know exactly what is causing his reactions, make all of his food from scratch. It's tough when you can't rely on some ready-made stuff but just stick to simple things: fruits, veggies, simple grilled meat, maybe homemade bread if you are up to trying it.

Then, once you have that going, talk to your allergist. Sometimes they forget that their patients are people and not just diagnoses. Share your concerns with him about needing to find what is causing these reactions in your son. They don't spend all day with you, so all they can go by is what is "usual". But you know your son best so if your gut is telling you he doesn't jive well with those preservatives, talk to the allergist about it and push for testing. While there are norms for allergies, there are also exceptions to the rule. My brother, for example, never outgrew his egg allergy even though a majority of kids do.

Be firm and go with your gut. If you're not happy with the answers you get, go elsewhere. In the meantime, feeding your son simple and safe foods will keep your mind at ease. Good luck!

_________________
Associate Editor at Allergic Living.
Allergies to all nuts and legumes except soy and green beans.


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PostPosted: Wed Sep 08, 2010 1:44 pm 
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Joined: Fri Sep 09, 2005 5:15 pm
Posts: 369
Location: Regina, Sask
Fourfallbabies...this sounds like a corn allergy. Since many/most food additives and preservatives are now made from corn, it might help to do some research on corn allergy. There is a lot of information regarding corn allergy on this website under "corn allergy".

I have been severely allergic to corn and ALL corn derivatives for my entire life. I do not need a corn "protein" for a horrible reaction to occur. I have to avoid all processed foods and even some that aren't processed because of the waxes, organic acids, ethylene gasses, washes, etc. that are allowed on food.


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PostPosted: Thu Sep 09, 2010 8:28 am 
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Joined: Sat Nov 24, 2007 10:03 am
Posts: 37
Location: Ontario, Canada
The allergist said right away that he suspected a corn allergy, however, all summer he's eaten corn on the cob- completely fine. No redness (the first sign usually) etc etc.

As of today, he's still reacting to all sorts of things. If it's not a completely preservative/additive free food, then pretty likely he'll react.

Funny, now that I think back, when he was 18 months old (he was ana to milk, allergic to egg and fish at this time) he was reacting to 13 other foods. It came on suddenly, things like tomatoes, berries, sesame (oil) etc etc. But when the allergist tested him ALL of it came out negative.

It disappeared as quickly as it came on (I think it lasted 4 months or so). All our 'go to' foods were off limits. It was very upsetting. I think that's when he was dx with oral allergy syndrome (not typical symptoms) because the allergist had NO idea what else to call it.

The time of year was a different time than it is now..

Anyways, I have a going list of about 14 additives to avoid right now.

If I cook from scratch he is okay. This is just a very trying time and he's very emotional that he cannot have things that he was having before..

Thanks for responding. I am very stressed.

I have an appt at Children's about 1 hour away, but the waitlist to be seen is February.

_________________
4yo ds: Finally!! Milk and Latex allergy. Preservative sensitivity. Asthma. Hay fever.
6yo ds: Hay fever, ADHD, asthma, penicillin, azithromycin, cephalosporin.


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PostPosted: Fri Sep 10, 2010 12:32 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Poor little guy! It's OK to let him know that you too, wish he could have the foods he used to have and that you're working towards finding out just what is making him sick so that you can find safe foods for him.

Validate his feelings of loss, frustration, worry-their all perfectly natural. Use pretend play to let him express himself. Maybe play restaurant and you be the person who can't have a food.

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Fri Sep 10, 2010 2:22 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
I have no suggestions or advice, just a hug! :huggy

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Wed Sep 15, 2010 9:22 am 
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Joined: Sat Nov 24, 2007 10:03 am
Posts: 37
Location: Ontario, Canada
Thank you, thank you..!

The list is absolutely HUGE right now. I've got it boiled down now (getting pretty good at this). All 'gums' (guar, bean locust) are a trigger, as well.

Along with almost ALL preservatives and additives. I think there are over 20 additives that I'm avoiding for him and adding daily.

So depressing! And pretty much suddenly! How strange!

Anyways, this morning he reacted to cereal he's been having for a bit now..can't figure this out. Will do my own test (smear on skin) of barley- cause that's the only thing I can think of in it!

Anyways, allergist is going to make some calls and see if he can get us into Children's Hospital sooner.

Everyday is an adventure right now.

Yesterday he had hives wherever the yogurt touched, and the day before wherever the homemade soup touched (I used prepared garlic that had 1 preservative, rubbed on skin later that evening and BINGO- but eats fresh garlic just fine).

Just wished anyone had heard of this before. Something is very VERY wrong with my son. :(

_________________
4yo ds: Finally!! Milk and Latex allergy. Preservative sensitivity. Asthma. Hay fever.
6yo ds: Hay fever, ADHD, asthma, penicillin, azithromycin, cephalosporin.


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PostPosted: Wed Sep 15, 2010 1:20 pm 
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Joined: Thu Aug 12, 2010 9:29 am
Posts: 93
I can feel the stress in your post. I want to offer my support although I don't really have any advice. I noticed that in your signature you have possible autoimmune disorder listed for your DS. Have you had him tested for any? Could it be that his immune system is overreacting and the large number of allergies are a symptom of something else? Has your doctor or allergist considered this and done testing for along these lines? Just thoughts that might open a door...

I also want to offer hugs to you, your son and the rest of your family.

_________________
Hiebs
Me - Allergic to Dogs, Cats, Dairy, Nickle.
DH - Celiac Disease
DS1 - Allergic to Horses, Cats, Dogs - Asthma, Eczema
DS2 - Allergic to Cats - Eczema, Asthma


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PostPosted: Wed Sep 15, 2010 8:02 pm 
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Joined: Wed Jun 17, 2009 9:23 pm
Posts: 129
This sounds a little bit like my son-he started reacting to 'food' in general-stuff he had eaten without issue. For us though it was confined to a period of about 6-8 weeks-he had over 20 epipsodes of lip swelling in that time (not due to oral allergy syndrome).
We kept a food diary-soy kept coming up but so did soooooo many other things. He was spt'd for many of the things that were common-many many of them came up as 'positive' on spt-he was food challenged to these individually and passed some and failed a couple of others (passed many more than failed....lots +++++ of false positives).
Our diagnosis was looking like 'idiopathic angioedema'.....but then it stopped as quickly as it started.
Personally I 'think' it is related to the crops we have growing across the road. Last year in June/july when the paddocks were dug up and seed planted this happened...interestingly enough the same thing (but to a much lesser extent) happened this year in June/july-its too much of a coincidence I think. Along with the fact that he developed an anaphylaxis to barley the first year we moved here (after having no food allergies for 3 years when he out grew egg allergy)....barley was the crop across the road. He has very bad grass allergies (rye grass etc) and these are closely related to grains that are grown near us.
Last year he developed peanut anaphylaxis (the same time peas were grown across the road...very closely related)
Who knows??? I do feel for you-you dont want to be stuck with an 'idiopathic angioedema' diagnosis-I hope you get to the bottom of it or it settles down as it has for us.
Ps he still gets random episodes of lip swelling that (to date) dont progress-we treat with antihistamine and it settles very quickly. He has 3-6 monthly immunologist appointments at the moment.
Goood luck!

PS sunflower is a quickly emerging new allergen and its something thats in nearly everything )barley too is in many many foods-hidden as malt/grain/flour/vinegar etc etc-sunflower is often not even labelled as such (just gets called vegetable oil)

Does he responde to antihistamine? this is how we manage it at school and away from home situations-if he says his lips are getting 'fat' whether we can see them swelling or not we advise school to administer antihistamine-when you dont know what you are dealing with its very difficult. At home now we will generally 'ride' out these reactions as they settle on their own after washing out the mouth and a bit of time. (but thats after 2 yrs of this-we certainly took a long time to get to this point!). I know antihistamines arent a long term option but it gives you are short term treatment until you know more certainly what you are dealing with. We just told the school we suspect a number of foods but the allergist is still trying to determine exactly what is causing these reactions-in the mean time we treat the symtpoms as they arise and 'please dont hesitate to call me if you are worried'.

_________________
twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.


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