invited to participate in research study Page 5

274 replies [Last post]
By melissa on Thu, 10-25-07, 15:53

I finally have an update. They just called and his peanut rast is 1.44. Since that is obviously below a 2, they want to schedule a peanut challenge next month (as per protocol). If he passes that challenge, he will go off his peanut dose for one month, repeat the challenge. If he passes that one, he will be declared no longer allergic to pn. If he doesn't pass it, he will go back on the highest tolerated dose for one year then repeat the challenge.
I'm excited but I'm nervous b/c of the failed egg challenge in June w/ a negative rast. However, the folks at Duke reminded me that he hasn't been eating egg for 2 1/2 years every day, and he has been eating peanut.
So, fingers crossed, hoping and praying for the best...
Melissa

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By Peg541 on Fri, 10-26-07, 05:26

This is wonderful news Melissa. Thank you for updating us. Keep us informed OK?
Peg

__________________

Peggy

Son 22 Allergic to peanuts, tree nuts, tomatoes, soy, milk, oats, fish.

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By niche on Tue, 10-30-07, 16:50

Great news I will keep my fingers crossed!!!!!!

Nichele

__________________

Nichele

DS 6 PA, TNA
DD 2 Fpies to Rice and Oat

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By SkyMom on Tue, 10-30-07, 18:08

Great news. Hopefully the success will continue.

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By TJuliebeth on Sat, 12-15-07, 06:20

Hi Melissa...

I was just wondering if you son had his challenge yet and if he is free of his allergy...

I haven't here posted for awhile but I keep up with this thread...It really gives me hope that there will soon be a safe treatment for all of those with PA...anyway, wishing your family the best with the challenge!

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By melissa on Wed, 12-19-07, 03:26

It took from 8:30 AM to 5 PM but he passed the challenge! We spent one hour giving him a cumulative amount of 5000mg of oat flour (this was the placebo, but we didn

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By PAMomInPA on Wed, 12-19-07, 14:13

That is absolutely the most wonderful thing I've ever heard. I'm so glad he didn't have any problems. Does he like peanut butter now??

Once again, thank you so much for participating in this research. I know it was a lot of work and worry for you and the rest of us are very grateful.

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By michaelsmom on Thu, 12-20-07, 14:12

Melissa - That is WONDERFUL!!!!!! Congratulations.

Thank you again for participating and for keeping us informed of your progress. This news is so encouraging for everyone.

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By niche on Thu, 12-20-07, 18:14

Thank you so much for posting! The hope of these studies means so much to me!

__________________

Nichele

DS 6 PA, TNA
DD 2 Fpies to Rice and Oat

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By jschumac on Thu, 12-20-07, 19:17

I am so excited for you and your family. Thank you so much. My son was just diagnosed with a peanut allergy 2 months ago and this gives us so much hope.

Do you have any idea when this treatment will be available to others?

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By Katoomba on Fri, 12-21-07, 17:31

This is amazing! It brings tears to my eyes to know that this is possible. Congratulations on the great success!

__________________

Cathleen
Mom to son with peanut and egg allergies

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By TJuliebeth on Thu, 12-27-07, 05:07

Melissa...

I am SO HAPPY he passed the challenge! What wonderful news for your son and for EVERYONE dealing with PA. THANK YOU SO MUCH for being courageous enough to participate and for sharing the experience with us!

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By melissa on Wed, 01-16-08, 19:41

He passed the second challenge!
Here are the details:
We arrived at Duke at 8am, got his vitals and IV, and over the next 6 hours he at a cumulative of 17 peanuts (increased dosages every 30 mins). He had no reactions. Then we waited 2 hours, and he had to eat a pb&j sandwich. He did fine w/ that, but towards the end of it he was tired and really not that hungry and didn

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By PAMomInPA on Wed, 01-16-08, 19:45

That's fantastic!

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By Luc's Mom on Wed, 01-16-08, 22:07

that is such wonderful and amazing news!!
i'm so excited for you and thank you for sharing this incredible journey with all of us..

Any idea when the results of this research might make it out there?

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By Danielle on Thu, 01-17-08, 01:29

You must be floating on air.
I am so happy for you - ONE HUNDRED TIMES OVER..............
Pls let your son know how brave my 5 and 6 year old little girls think he is. I kept them updated and now that the 6 year old reads she read this last update. He is their hero!!!!!!!! Big hugs to you as well since you are MY HERO. I can only imagine how scared you have been throughout this research but you have lead the path for so many of us. I thank you..
Keep us all posted..........

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By michaelsmom on Thu, 01-17-08, 19:46

Melissa,

That is so very exciting. All that effort was worth it. Two years ago would you have ever dreamed that you would be worried about how to find non-contaminated peanuts? I am really glad to hear that they will be continuing to monitor the progress to make sure that everything is continuing to go well. Once again, that you for having the courage to participate and thank you for sharing your story.

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By disneycruising on Thu, 01-24-08, 00:29

Originally Posted By: michaelsmomMelissa,

That is so very exciting. All that effort was worth it. Two years ago would you have ever dreamed that you would be worried about how to find non-contaminated peanuts? I am really glad to hear that they will be continuing to monitor the progress to make sure that everything is continuing to go well. Once again, that you for having the courage to participate and thank you for sharing your story.

Michelle, this is so exciting to hear.

I have followed your story faithly...always watching for updates. Thank you for sharing it with us.

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By C on Sun, 07-06-08, 21:52

Melissa--any updates since last post?

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By JenniferT on Thu, 09-04-08, 20:13

I just read this thread (not all the way through - just the begining and the end) and it brought me to tears. I have so much hope after reading it. Melissa - a big thanks to you and your brave little boy who conquered your fears to participate in this groundbreaking study. You have paved the way for more good to come - I'm so excited I can barely sit still now!

__________________

Jen
DS 4 (NKA)
DD 20 months (Allergic to Peanuts and Sesame)

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By jbud27 on Fri, 10-24-08, 00:57

Melissa,
thank you for sharing your experience with Duke. I tried to get my son into the study but couldn't because we live in Austin. We are doing herbal therapy working with Dr. Li from Mt. Sinai. We just started, but she uses an herbal formula that has been dropping kids' IGE levels. She is the doctor who developed FAFH-2, an herbal combination which may block anaphylatic shock. Mt. Sinai in doing human trials right now.
If anyone is interested, I will write more about what we are doing.
Jeanne

__________________

Jeanne

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By two4me on Wed, 10-29-08, 04:03

Definately interested. Please do tell more as you get info. The research area on this board is my light at the end of the tunnel :) And I LOVE to see new posts that give hope.

Thanks and Good luck!

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By can8tv on Fri, 01-09-09, 01:30

Jeanne,

Do you have any of the contact info for Dr. Li or Dr. Sampson. My son is 13 and may either a)participate in the study or b)try the herbal therapy through an herbalist. Also if there is an herbalist in the D.C. area that anyone knows of that would be great. Though I would definitely go to NYC if need be. Dr. Sampson used to be at John Hopkins when my son was first born, but he was too young to be studied then. Does anyone know if Dr. Wood at Johns Hopkins is doing any research or what the status is for the research Dr. Burks is doing in NC? Thanks to all.

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By C on Wed, 02-25-09, 17:53

Any new updates, Melissa?

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