oral desensitization therapy?

Posted on: Fri, 03/24/2006 - 5:11pm
jayD's picture
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Joined: 09/20/2000 - 09:00

Our 6 year old PA sons allergist brought this up at his appt. last week. He is a well respected pediatric allerigist in our area, and stays up to date with all the new stuff......he thinks my son will be a good candidate for this in the future.(he would want to wait until he is well into his allergy shot program and his immune system is pumped up a bit more) The whole time he was talking about it, my mind was racing and throwing up red flags !! My son has never had a reaction from ingestion ( he has only eaten peanutbutter once, by accident when he was 2) , our only knowledge of his PA has come from numerous tests from about 5 months to the present. His cap rast has fluctuated -went lower, then a bit higher this last time and is "moderate". his skin tests have always shown a pretty big reaction though. The dr. went on and on about the success with this therapy and very severe milk and egg allergies, but in my mind I just put the peanuts in a different place. I am already struggling a bit with the idea of my sons allergy shots....it is hard watching them pump your kid full of stuff you know makes him miserable, but of course, I have seen the results in many other friends and family members and know that it does work.....it doesn't make the process easy though. Just curious what other peoples take on the oral desensitization with the peanuts is and if anyone elses Dr. has talked with them about it. I just don't think I can be comfortable trying it . thanks, Jen

Posted on: Fri, 03/24/2006 - 9:50pm
melissa's picture
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Joined: 07/05/2004 - 09:00

Hi Jen,
We are in a research study using Oral desensitization at Duke, still in the early phases...we've been in it for about a year, there are others who have been in for 2 years. We are seeing good results; my son is now desensitized to peanuts but still allergic. In other words, he would most likely be ok w/ an accidental exposure but is still allergic and still has to avoid peanuts.
Please read my very long thread in the research section titled "invited to participate in research study"...I'll try to answer any questions you have.
Melissa

Posted on: Fri, 03/24/2006 - 11:48pm
dgood's picture
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Joined: 03/27/2004 - 09:00

JayD, we have the same allergist from what I recall and he just recently started planting the seed for egg desentization in a few years when she is around 5 (she just turned 3). Apparently he is the only doctor to be performing egg desentization in the country?? Anyway, her egg CAPRAST results went up 5X from last year and he felt if it appears her egg allergy is here to stay, I should consider it. He did not bring up peanut desentization though, although he did mention meeting with allergists recently from Duke and learning more about the therapy.
He is starting to recommend things outside my comfort zone, like feeding her nuts that she doesn't show allergies to. He feels the new theory is that kids are being introduced new foods too late and they are reacting to them. I'm not ready to hear that yet based on everything I've learned up to this point.
So, I love the idea, but I personally would want to wait to see more data on what they are doing and longer term results. I also want to give my daugher a chance to outgrow some of her allergies on her own before turning to this experimental therapy.

Posted on: Sat, 03/25/2006 - 9:54pm
jayD's picture
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Joined: 09/20/2000 - 09:00

Thnak you both for your input! Melissa, I will check out your thread.
Our Dr. actually brought up the Duke study, but he felt it was more drastic than what he is doing, and not as safe..... I will have to read more about it . It is always nice to compare notes on Dr. S, dgood! Jen

Posted on: Sun, 03/26/2006 - 3:35am
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Joined: 05/28/2009 - 16:42

"kids are being introduced new foods too late and they are reacting to them..."
My son was introduced to peanuts in utero - that's about as early as it gets. I believe he's severely allergic BECAUSE of that. JMO

Posted on: Sun, 03/26/2006 - 4:23pm
jayD's picture
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Joined: 09/20/2000 - 09:00

Melissa, I just went through and read your entire thread- WOW! It was exciting to read your sons progress through the trial, and very encouraging....it really answered a lot of my questions and fears on this subject. It helps put it into perspective a bit, and certainly makes me feel better seeing the great results so far... thanks for sharing your story! I will keep watching! Jen

Posted on: Fri, 03/24/2006 - 9:50pm
melissa's picture
Offline
Joined: 07/05/2004 - 09:00

Hi Jen,
We are in a research study using Oral desensitization at Duke, still in the early phases...we've been in it for about a year, there are others who have been in for 2 years. We are seeing good results; my son is now desensitized to peanuts but still allergic. In other words, he would most likely be ok w/ an accidental exposure but is still allergic and still has to avoid peanuts.
Please read my very long thread in the research section titled "invited to participate in research study"...I'll try to answer any questions you have.
Melissa

Posted on: Fri, 03/24/2006 - 11:48pm
dgood's picture
Offline
Joined: 03/27/2004 - 09:00

JayD, we have the same allergist from what I recall and he just recently started planting the seed for egg desentization in a few years when she is around 5 (she just turned 3). Apparently he is the only doctor to be performing egg desentization in the country?? Anyway, her egg CAPRAST results went up 5X from last year and he felt if it appears her egg allergy is here to stay, I should consider it. He did not bring up peanut desentization though, although he did mention meeting with allergists recently from Duke and learning more about the therapy.
He is starting to recommend things outside my comfort zone, like feeding her nuts that she doesn't show allergies to. He feels the new theory is that kids are being introduced new foods too late and they are reacting to them. I'm not ready to hear that yet based on everything I've learned up to this point.
So, I love the idea, but I personally would want to wait to see more data on what they are doing and longer term results. I also want to give my daugher a chance to outgrow some of her allergies on her own before turning to this experimental therapy.

Posted on: Sat, 03/25/2006 - 9:54pm
jayD's picture
Offline
Joined: 09/20/2000 - 09:00

Thnak you both for your input! Melissa, I will check out your thread.
Our Dr. actually brought up the Duke study, but he felt it was more drastic than what he is doing, and not as safe..... I will have to read more about it . It is always nice to compare notes on Dr. S, dgood! Jen

Posted on: Sun, 03/26/2006 - 3:35am
anonymous's picture
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Joined: 05/28/2009 - 16:42

"kids are being introduced new foods too late and they are reacting to them..."
My son was introduced to peanuts in utero - that's about as early as it gets. I believe he's severely allergic BECAUSE of that. JMO

Posted on: Sun, 03/26/2006 - 4:23pm
jayD's picture
Offline
Joined: 09/20/2000 - 09:00

Melissa, I just went through and read your entire thread- WOW! It was exciting to read your sons progress through the trial, and very encouraging....it really answered a lot of my questions and fears on this subject. It helps put it into perspective a bit, and certainly makes me feel better seeing the great results so far... thanks for sharing your story! I will keep watching! Jen

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