Desensitization Trial

Posted on: Thu, 05/18/2006 - 1:09am
Kara Finnstrom's picture
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Joined: 05/18/2006 - 09:00

I'm a reporter with WCNC in Charlotte doing a story on a desensitization trial at Duke University. I'm following a little girl who has done incredibly well in it... tests now suggest she could eat one peanut safely and she could not have done that two years ago when she entered. At that time there was much concern voiced in response to the email her mother posted here... I've attached it below as well as more information from Duke on the study. Wondered if there is still such hesitation on the part of parents to take part in this trial? Any responses would be appreciated.

Sincerely,
Kara Finnstrom
WCNC Reporter/Anchor

posted April 15, 2004 08:58 PM
--------------------------------------------------------------------------------
My 4 year old daughter has just been asked to participate in a study conducted by Dr. Wesley Burks at Duke University Medical Center. It sounds good and then very scary at the same time. Does anyone have any thoughts or experience with this? She will be given small amounts of penut protein over a period of 16 weeks until she reaches the equivilent of one peanut and then will continue that. She will have her blood drawn every three months as well as have the skin prick test. The outcome could be great but it also could be dangerous for her. Any thoughts?
Thanks Brooke

Previous scientific studies have looked at different types of allergy shots in patients who have peanut allergy. Given the high rate of undesirable allergic reactions in the patients in these studies and the repeated rate of accidental peanut ingestion, other forms of immunotherapy are needed for this potentially fatal allergy. Oral immunotherapy has been studied for the treatment of nasal allergies and food allergy, as well as drugs such as antibiotics and biological agents. In the most recent studies on oral immunotherapy with patients who have food allergy (milk, peanut, egg and fish), the majority of patients (85%) successfully completed the treatment regimen. Although not scientifically thorough, these studies demonstrated that the mild side effects associated with treatment were controlled by the occasional use of antihistamines.
This pilot study proposal is designed to find out if we can use oral peanut immunotherapy in subjects allergic to peanuts. Our hypothesis is that oral peanut immunotherapy will make subjects who have peanut allergy less allergic and induce changes in their immune system. The goal of this proposal is to produce a new treatment that would benefit these subjects by lowering the risk of anaphylactic reactions (desensitization) and changing the peanut-specific immune response in subjects who have peanut allergy (tolerance). We will work with subjects who are at risk for life-long peanut sensitivity (peanut specific IgE > 15 kIU/ml in blood studies and significant initial symptoms). We anticipate being able to make these subjects less allergic to peanuts and cause long-term immune changes in their peanut allergic response. The specific aims for this proposal are to: (1) make use of oral peanut immunotherapy to treat subjects with peanut allergy to lower the risk of anaphylactic reactions and cause children to outgrow their peanut allergy, and (2) determine the effect that oral peanut immunotherapy has on the peanut-specific immune response.

Posted on: Thu, 05/18/2006 - 3:00am
starlight's picture
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Joined: 01/16/2004 - 09:00

You may want to check out this post: [url="http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000187.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000187.html[/url]
Personally, I'd enroll in a trial like this but unfortunately the researchers of PA don't seem interested in doing adult studies.

Posted on: Thu, 05/18/2006 - 4:37am
melissa's picture
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Joined: 07/05/2004 - 09:00

kara,
My son is in the same study...I was very hesitant at first to sign him up and searched for a while for reasons not to. Although it is scary, we have seen great benefits...in the beginning he had a significant reaction to 1/12th of a peanut and now eats the equivalent of one peanut daily.
I'd be happy to answer other questions if needed.
Melissa

Posted on: Mon, 07/17/2006 - 11:27am
SoxFan's picture
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Joined: 07/17/2006 - 09:00

Melissa,
I was reading the posts and I wanted to ask a couple of questions. I called Duke University a few days ago to learn more about this study and it sounds amazing. I was wondering if you'd share with me how long your child has been in the study? And, how long was it before you started to see the benefit of this study? Thanks.
-Michael

Posted on: Mon, 07/17/2006 - 12:11pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

My son is 21 and I would have to ask him how he felt but I would be extremely reluctant to enter him into this sort of program.
I like the idea and understand desensitization but it sounds risky to me.
When we first found out he was allergic it was in 1989 maybe, he was 5. The research I did, no internet then, told me that desens. studies like this usually end in a couple of fatalities. That scared me enough to still feel it today, hence my reluctance.
Peggy

Posted on: Mon, 07/17/2006 - 1:18pm
joeybeth's picture
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Joined: 09/01/2006 - 09:00

a couple of years ago i would have said NO immediately when asked if i would let my kids participate in such a study.
now i have actually considered searching out some sort of study like this closer to our area in the future. i would love the opportunity to make life potentially less risky for my girls. my goal would never be to get them to the point of being able to consume peanut products....but rather to get them to the point where a small, accidental exposure wouldn't be a serious problem.
so...yes...i would be thrilled to have them participate in such a study if i could be reasonably satisfied that it was safe and necessary precautions were in place in case of an emergency.

Posted on: Mon, 07/17/2006 - 10:43pm
melissa's picture
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Joined: 07/05/2004 - 09:00

Any study is risky, and do I feel guilt at times for putting DS through this? Yes. But, we've seen a lot of improvement and I trust Dr. Burks...
We have been in the study since March 2005.
On seeing improvements...hard to answer...he had a severe reaction the day we started, to less than a tenth of a peanut, requiring epi and benadryl...after that, no more severe reactions...up until about 150 mg, he would get red splotches around his mouth after his dose for the first couple of days of an increased dose (does that make sense)...this stopped happening at all after we got to somewhere around 150 mg, and I think that was something fairly common w/ all study participants. When we went back last month to go way up on dose, he had a minor reaction w/ a cumulative amount of 7 peanuts in his system...I guess that is considered a major improvement! We came home on 600 mg (2 peanuts) and for about 3 days he got the red splotchiness around his mouth w/ his dose...then he hasn't gotten that anymore...so...
still obviously allergic, but able to handle a whole lot more than when we started.
I don't know what to say to those who say they would never let their kids do this...it is an individual decision. We thought and prayed long and hard about it. It was not gone into lightly. It is a major time and emotional commitment on our whole family. But if no one ever does this, there will be no cure, or no help, ever. This is just like allergy shots, which have helped a great deal of people. There have been no deaths in this study, and the death associated w/ desensitization was in a trial using injections, not eating the peanut and "buffering" through the gut. I would never try to talk someone into this study though, because it is scary, and it requires a lot of time and trust and patience.
Hope this helps,
melissa

Posted on: Tue, 07/18/2006 - 11:48am
SoxFan's picture
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Joined: 07/17/2006 - 09:00

Melissa,
Thank you so much for your quick response to my post. It sounds like your family has been working at this for a little over a year and it sounds like it's well worth it. You're right it can be risky but it sounds like your son is making made great strides in the right direction. I have been thinking about this for weeks and after speaking with Duke and the assistants there I'm finding myself thinking about this all the time. I believe you are in good hands as Dr. Burks is one of the doctors who are on the forefront of food allergy studies. Good luck and thanks again for your response!

Posted on: Tue, 07/18/2006 - 10:58pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

"But if no one ever does this, there will be no cure, or no help, ever."
Exactly. If everyone waited for someone else to take the risk, research would come to a halt. I can't even express my gratitude to all of those who are willing to participate in these studies.

Posted on: Thu, 05/18/2006 - 3:00am
starlight's picture
Offline
Joined: 01/16/2004 - 09:00

You may want to check out this post: [url="http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000187.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000187.html[/url]
Personally, I'd enroll in a trial like this but unfortunately the researchers of PA don't seem interested in doing adult studies.

Posted on: Thu, 05/18/2006 - 4:37am
melissa's picture
Offline
Joined: 07/05/2004 - 09:00

kara,
My son is in the same study...I was very hesitant at first to sign him up and searched for a while for reasons not to. Although it is scary, we have seen great benefits...in the beginning he had a significant reaction to 1/12th of a peanut and now eats the equivalent of one peanut daily.
I'd be happy to answer other questions if needed.
Melissa

Posted on: Mon, 07/17/2006 - 11:27am
SoxFan's picture
Offline
Joined: 07/17/2006 - 09:00

Melissa,
I was reading the posts and I wanted to ask a couple of questions. I called Duke University a few days ago to learn more about this study and it sounds amazing. I was wondering if you'd share with me how long your child has been in the study? And, how long was it before you started to see the benefit of this study? Thanks.
-Michael

Posted on: Mon, 07/17/2006 - 12:11pm
Peg541's picture
Offline
Joined: 12/29/2002 - 09:00

My son is 21 and I would have to ask him how he felt but I would be extremely reluctant to enter him into this sort of program.
I like the idea and understand desensitization but it sounds risky to me.
When we first found out he was allergic it was in 1989 maybe, he was 5. The research I did, no internet then, told me that desens. studies like this usually end in a couple of fatalities. That scared me enough to still feel it today, hence my reluctance.
Peggy

Posted on: Mon, 07/17/2006 - 1:18pm
joeybeth's picture
Offline
Joined: 09/01/2006 - 09:00

a couple of years ago i would have said NO immediately when asked if i would let my kids participate in such a study.
now i have actually considered searching out some sort of study like this closer to our area in the future. i would love the opportunity to make life potentially less risky for my girls. my goal would never be to get them to the point of being able to consume peanut products....but rather to get them to the point where a small, accidental exposure wouldn't be a serious problem.
so...yes...i would be thrilled to have them participate in such a study if i could be reasonably satisfied that it was safe and necessary precautions were in place in case of an emergency.

Posted on: Mon, 07/17/2006 - 10:43pm
melissa's picture
Offline
Joined: 07/05/2004 - 09:00

Any study is risky, and do I feel guilt at times for putting DS through this? Yes. But, we've seen a lot of improvement and I trust Dr. Burks...
We have been in the study since March 2005.
On seeing improvements...hard to answer...he had a severe reaction the day we started, to less than a tenth of a peanut, requiring epi and benadryl...after that, no more severe reactions...up until about 150 mg, he would get red splotches around his mouth after his dose for the first couple of days of an increased dose (does that make sense)...this stopped happening at all after we got to somewhere around 150 mg, and I think that was something fairly common w/ all study participants. When we went back last month to go way up on dose, he had a minor reaction w/ a cumulative amount of 7 peanuts in his system...I guess that is considered a major improvement! We came home on 600 mg (2 peanuts) and for about 3 days he got the red splotchiness around his mouth w/ his dose...then he hasn't gotten that anymore...so...
still obviously allergic, but able to handle a whole lot more than when we started.
I don't know what to say to those who say they would never let their kids do this...it is an individual decision. We thought and prayed long and hard about it. It was not gone into lightly. It is a major time and emotional commitment on our whole family. But if no one ever does this, there will be no cure, or no help, ever. This is just like allergy shots, which have helped a great deal of people. There have been no deaths in this study, and the death associated w/ desensitization was in a trial using injections, not eating the peanut and "buffering" through the gut. I would never try to talk someone into this study though, because it is scary, and it requires a lot of time and trust and patience.
Hope this helps,
melissa

Posted on: Tue, 07/18/2006 - 11:48am
SoxFan's picture
Offline
Joined: 07/17/2006 - 09:00

Melissa,
Thank you so much for your quick response to my post. It sounds like your family has been working at this for a little over a year and it sounds like it's well worth it. You're right it can be risky but it sounds like your son is making made great strides in the right direction. I have been thinking about this for weeks and after speaking with Duke and the assistants there I'm finding myself thinking about this all the time. I believe you are in good hands as Dr. Burks is one of the doctors who are on the forefront of food allergy studies. Good luck and thanks again for your response!

Posted on: Tue, 07/18/2006 - 10:58pm
PAMomInPA's picture
Offline
Joined: 04/04/2006 - 09:00

"But if no one ever does this, there will be no cure, or no help, ever."
Exactly. If everyone waited for someone else to take the risk, research would come to a halt. I can't even express my gratitude to all of those who are willing to participate in these studies.

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