Daughter asked to participte in a desensitiation study

Posted on: Thu, 04/15/2004 - 10:58am
benmadwood's picture
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Joined: 03/30/2001 - 09:00

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

Posted on: Thu, 04/15/2004 - 11:59am
Sandra Y's picture
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Joined: 08/22/2000 - 09:00

I wouldn't let my child participate in any medical study that could be dangerous for him. I think PA adults should be free to make that decision for themselves, but I would not make that decision for another person.
It is possible to live safely with peanut allergy, so I would not be willing to jeapardize his safety for the sake of a medical study.

Posted on: Fri, 04/16/2004 - 2:20am
SweetAmanda's picture
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Joined: 03/31/2002 - 09:00

I assume this will be done at the hospital. If she starts to react after the first exposure, will they continue in subsequent weeks? Who is involved in this study? I thought all sensitization studies were deemed too dangerous after a death was reported in one such study?

Posted on: Fri, 04/16/2004 - 9:29am
Peg541's picture
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Joined: 12/29/2002 - 09:00

I see you are not getting too many responses. Sorry, this is too scary for me (and maybe others of us) to contemplate.
I think you have to go with your heart on this one. It's a fine medical institution and maybe a fine doctor but it is too scary for me.
I'd wait until the child is old enough to understand the risks and benefits so she/he can weigh them for herself.
I thought my son would say no. I asked him today, he said "No NO NO." He's 19 now and managing quite fine. He does yearn for a more carefree existence but in the meantime he is managing fine, away at college too!
My early research when we first found out about his allergy noted that even hospital based desensitization experiences resulted in deaths, and not just one.
Sorry to not be more positive.
Peggy

Posted on: Fri, 04/16/2004 - 11:02am
Cindia's picture
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Joined: 06/05/2001 - 09:00

I would want to know what happens after the study? If she "passed" the tests and was able to eat a peanut without reaction, would she then be considered "cured"? Would she be free to eat peanuts after this? Or would you still exclude them from her diet?
Bottom line, my thoughts on this... "Please, don't do it!" I was a bit shocked by the title of this thread so just had to respond. Not exactly along the lines of "My six year old wants to get her ears pierced" kind of thing.
I agree with Peg. When she is an adult she can make that decision for herself. Could you really justify this decision to her if you signed her up and something bad happened?
I don't want you to feel we are picking on you. We are genuinely concerned about the safety of PA children, not just our own. Please let us know what you decide on this.
Can you give us a little background on your child's allergy? What are her Rast scores, past reactions, etc.?
Sincerely,
Cindia

Posted on: Tue, 04/20/2004 - 12:08am
markextra's picture
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Joined: 05/31/2001 - 09:00

My reaction is quite the opposite of other people who posted. I also have a 4-yr old PA daughter. She is very comfortable with her allergy. She has had only one reaction - 2 years ago welts instantly broke out when she touched peanut butter to her face.
One of the very difficult things about having a PA child, or being a PA adult, is having to avoid even trace amounts of peanuts. So we avoid food with no peanut ingredients but that may be cross-contaminated from being manufactured on the same equipment as foods containing peanuts.
The pediatric allergist says there is no way to know, based on her RAST scores, how likely it is that she will go into analphylactic shock. And even a tiny amount might trigger a severe reaction.
I think a study by an excellent hospital, by excellent doctors, would be extremely careful about hurting a child. And I would carefully review the study plan and talk with the doctors befoer I would allow my daughter to participate.
The lives of everyone in my family would improve if we only knew how sensitive my daugther is. For example, if it now takes, say, one peanut to trigger even a small reaction, then maybe we would eat a breakfast cereal made on the same machinery (after cleaning) as a peanut-containing cereal.

Posted on: Tue, 04/20/2004 - 12:48am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Quote:Originally posted by markextra:
[b]My reaction is quite the opposite of other people who posted. I also have a 4-yr old PA daughter. She is very comfortable with her allergy. She has had only one reaction - 2 years ago welts instantly broke out when she touched peanut butter to her face.
One of the very difficult things about having a PA child, or being a PA adult, is having to avoid even trace amounts of peanuts. So we avoid food with no peanut ingredients but that may be cross-contaminated from being manufactured on the same equipment as foods containing peanuts.
The pediatric allergist says there is no way to know, based on her RAST scores, how likely it is that she will go into analphylactic shock. And even a tiny amount might trigger a severe reaction.
I think a study by an excellent hospital, by excellent doctors, would be extremely careful about hurting a child. And I would carefully review the study plan and talk with the doctors befoer I would allow my daughter to participate.
The lives of everyone in my family would improve if we only knew how sensitive my daugther is. For example, if it now takes, say, one peanut to trigger even a small reaction, then maybe we would eat a breakfast cereal made on the same machinery (after cleaning) as a peanut-containing cereal.[/b]
Deliberately harm a child? No doctor or hospital would ever do that. But you take a look at the releases the family will have to sign in order for the hospital to attempt to desensitize a child in a study. They prepare for every eventuality, even death.
Things get away quickly when a child is involved. Kids go downhill very quickly in a critical care situation. I'd hate to submit my child to a study based on a belief that the doctors would be careful.
Let them be careful with monkeys or rats!
In many cases it is not a whole peanut that will trigger a reaction, it is a MICRON of a peanut so even "may contains" or "manufactured on...." are seriously dangerous for our children.
I do not mean to sound like I am beating you up over this and I do understand we all do things differently. This is just my opinion and not meant to infulence anyone's thinking.
Peggy

Posted on: Tue, 04/20/2004 - 12:57am
smack's picture
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Joined: 11/14/2001 - 09:00

Please keep us updated if you are going ahead with this study.
Can you let us know what past history your daughter has with allergic reactions and such?
Thanks!

Posted on: Tue, 04/20/2004 - 4:28am
benmadwood's picture
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Joined: 03/30/2001 - 09:00

Thank you all for your replys. I am still torn because no I don't want to be responsible if anything happens to my daughter. I am very sensitive and careful with her allergy. The way the study is conducted is that they will do all of the blood test and skin test the first day and then they will insert an IV just in case and start her out with a tiny trace amount building through out the day. We will go back the next day and they will do it again. They will watch for reactions and then after that I am to take her home and give her that same amount for two weeks and then we go back and they will increase it and watch her and then I will give her that amount for two weeks. It will go on for 16 weeks like that and then she will be tested again every three months to check her levels. There is no where on the consent form mentioning death which surprised me. There is another 4 year old with higher levels participating and so far she is doing well with it. I keep praying for the right answer but I also prayed that I would find the right doctor to help us and then Dr. Burks moved to Duke. This is what he does and is his specialty he is trying so hard to figure this stuff out and protect PA kids and adults. I don't want anything to happen to my dauther but if she does do it successfully and we are able to help others what a great thing that would be. My decision has not been made and even if I say yes we are going to participate I will probably chicken out when we get there but I am carefully considering the options. If anyone else has any thoughts or knowledge about this please let me know. Also, I would like to know more about the people that have died while conducting these studies where they were and the doctors performing them. If you have any information please let me know.
Thank you
Brooke

Posted on: Tue, 04/20/2004 - 4:50am
ACBaay's picture
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Joined: 03/19/2002 - 09:00

Hi Brooke,
Here is a Journal article of a research study by Dr. Burks and Dr. Sampson and others in which they use genetically modified peanut protein so as not to trigger a reaction during de-sensitization. In the article it specifically states that traditional de-sensitization for peanut allergy is too dangerous. Maybe this is what is being used for the study. Let us know.
Thanks,
Andrea
[url="http://www.jimmunol.org/cgi/content/full/170/6/3289"]http://www.jimmunol.org/cgi/content/full/170/6/3289[/url]

Posted on: Tue, 04/20/2004 - 4:52am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Brooke,
I can't cite my research because I read it such a long time ago before the internet.
My son is 19 so I was really on my own.
I remember reading that doctors in England admitted a bunch of people to the intensive care unit to conduct a desensitization project. A number of people died.
How many I do not remember and what their methods were I do not remember.
I am sure the study you are looking at is bona fide and don't mean to scare you.
Good luck in whatever you choose to do.
Peg

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