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#13961 - 04/27/07 10:04 AM Allergy testing
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
We have finally got an allergist appointment for next week(there is a 14 month waiting list in Queensland - quite a few begging phone calls were made!) and I would appreciate any advice from others who have carried out allergy tests on their children with ichthyosis.
Primarily, I have requested this testing for the Eosinophilic Osophagitis that has plagued Lucia for the last 5months, but understand that those with NS will no doubt have allergic reactions to certain foods. Since Lucia has never eaten orally, we suspect inhalant allergies.
I understand that the high Ige levels in those with NS make testing complicated, but what about skin testing for ALL forms of ichthyosis?
Have people found the allergy tests in general to be accurate and productive?

Thanks in advance for your help!

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#13962 - 04/27/07 12:55 PM Re: Allergy testing
texlex99_dup1 Offline
Member

Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
Hey Francesca, I answered your other post in I think it was "Other Forms". Please please do NOT do skin testing, do blood testing instead.

Becky

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#13963 - 04/27/07 08:11 PM Re: Allergy testing
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
We had Jules tested for a milk and soy allergy, but we did a blood test. It took about 2-3 months to do, but that was because we sent it to a ridiculous lab, it should have taken only a few weeks.

I do have to say, that if Lucia hasn't been exposed to whatever it is you're testing for, it'll be pointless lol The body can't build up IgE towards say, tree nuts, until it's been exposed to the allergen, you know? At least I'm pretty sure that's how it works.

Inhaled allergens, huh? I have pollen allergies pretty bad, where if I stay outside too long during pollen season (right now, actually lol) it'll be hard for me to breathe, and I'll get nose-bleeds, etc. Dmitry has awful mold allergies, he'll start to wheeze and cough if he's around it.

I'm also allergic to a million different foods (some raw veggies, fruits, all nuts except peanuts, shellfish), but surprisingly Julia's not allergic to any food yet! Go figure. We did figure out that she's allergic to lavender, though - the few times I've bathed her in it (it was an additive in a bath soap) she got all splotchy and itchy and uncomfortable.
_________________________
Courtney
Mom to Julia

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#13964 - 05/01/07 04:07 AM Re: Allergy testing
momof3 Offline
Member

Registered: 04/12/07
Posts: 209
Loc: SJ, CA USA
Hi Francesca,

We had Dane tested for allergies as well (blood test). His IgE levels were just slightly elevated (0-12 being normal, his was @30). He tested positive for an egg white allergy, although his doctors don't think it's high enough to be a problem.(?) The interesting thing is is that there was a time when we felt he was reacting to more foods than that (his nose would run or he'd vomit immediately after eating certain foods). This we believed to be a food sensitivity rather than an allergy (IgG), but still a concern for a baby who was refluxing and not gaining weight due to the extreme skin condition. So, we did another blood test through the Great Plains Laboratory (not a favorite of most western medicine doctors). However, Dane's GI specialist supports it, as many of his patients use this laboratory and with great results. Long story short, Dane's panel came out more severe than anyone's the doctor had ever seen. He was practically sensitive to everything except seafood, and probably only because he had never eaten it before. The theory is that when a person has leaky gut, which most of these children with reflux have, anytime they eat a new food, the nutrients seep through the intestines and the body recognizes this as an invader, or something that needs to be combatted, thus causes an immune response. Basically, everytime Dane ate, he was becoming sensitive to what he was eating. Not all doctors will support this theory, but what I find interesting is that as soon as Eric and I introduced high dose probiotics and an antifungal along with the prevacid for his reflux, we saw Dane get less reactive to the foods we thought he had a problem with, and he began to gain weight. We even thought that Dane could have been reacting to the corn syrup solids in his Neocate formula...and he did show to be sensitive to corn. Thankfully, Dane is now eating everything, and really enjoying his food. He still is small, but he's now in the 22% for his weight (and now in the 3% for his height, which is an improvement from not even making the chart)!!

I hope this helps a bit. You can look up the great plains laboratory online at www.greatplainslaboratory.com. They do a lot of work with autism, but they also specialize in other diseases/disorders.

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#13965 - 05/01/07 05:19 AM Re: Allergy testing
momof3 Offline
Member

Registered: 04/12/07
Posts: 209
Loc: SJ, CA USA
In answer to the other part of your question, Dane also has inhalant allergies, as does his brother and sister. All three of my children are allergic to grasses, many trees, most animals (except for dogs), and are all severely allergic to dust mites! They all use special pillows, and have inhalers that they use during colds, after strenuous activities, and which they use daily during certain times of the year. With that being said, they really are living "normal" lives. We just know what we need to do when the asthma "bark" kicks in, or when they begin to show signs of a cold or hayfever. I guess Eric and I just carry some major allergy/asthma genes!

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#13966 - 05/05/07 12:21 AM Re: Allergy testing
Lisa for Jake Offline
Member

Registered: 04/26/01
Posts: 103
Loc: Manchester, England
We were always told, not to bother taking jake now 10 NS to have allergy tests as they wouldnt be clear. However we know from experience that he can eat tuna, but no other fish, he did go to the hospital last week and we were told that NS doesnt show any clear results, I had prepared Jake for a blood test, this didnt happen as Doctor said it would not be reliable, I know he is allergic to goats and also has hayfever

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#13967 - 05/05/07 04:23 AM Re: Allergy testing
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Thanks for all your input and advice everyone.
Interstingly the allergist said that her EE/EO is part of the NS apparently! He worked under Prof Harper at Great Ormond Street Hospital in London several years ago and reckons that most of the 26 cases of NS that are on their files from around Europe all have symptoms of EE/EO.
He has put Lucia on a steroidal nasal spray and Zyrtec(which is an over the counter hay-fever med over here - I can't believe it can be this easy if it works after 5months of drama) and I am to keep up with the gastric emptying and reflux meds - in 2 weeks she has another endoscopy to see how the eosophagus is faring.
Lets hope we can see improvements well before that - a day of no vomiting up tube feeds would be a real milestone! As would staying over the 8kg mark! Meanwhile he is doing blood tests for the usual(cats, dustmites, pollens, dairy, soy, eggs etc.)
I will let you know the outcome - it should be interesting on the food front since she has never eaten orally and has been on Elecare since birth! We, too, are a bit suspicious of the corn starch content - I have been told that it would be the equivalent of drinking cream on a daily basis ie. heavy and rich. No wonder she is full of mucous as I try and pump 1.5litres into her!

Despite my reservations and concerns, the allergist did confirm that he thinks the tests would be fairly accurate. Mmmmm, I am not convinced for all your reasons. BUT we would dearly like to get to the bottom of the mucous production and look forward to the day when Lucia can eat some food in comfort [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Lisa, have you heard/seen Prof Harper at GOSH with Jake?

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#13968 - 05/06/07 01:12 AM Re: Allergy testing
Leandra Offline
Member

Registered: 09/06/05
Posts: 95
Loc: Colorado Springs, CO, USA
We had blood testing for allergies as well but were warned by the specialist that blood testing can be inferior to the skin testing dependent upon many factors. Don't know if that helps anyone or not. :-P

Leandra
_________________________
Mom to three gorgeous princesses all affected with significant medical challenges, one of whom has CIE.

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#13969 - 05/06/07 01:39 AM Re: Allergy testing
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Hey Francesca - what does ee/eo stand for specifically?
_________________________
Courtney
Mom to Julia

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#13970 - 05/06/07 02:09 AM Re: Allergy testing
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Hey Courtney, EE is Eosinophilic Eosophagitis but it is commonly referred to as EO as I think the US spelling is w/out the 'E'? Thats what the gastro said to us when googling for it!

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