invited to participate in research study Page 4

274 replies [Last post]
By AllergyKids on Fri, 01-26-07, 13:57

Hey guys-

At AllergyKids, we are working on research into what has caused all of these little ones to have food allergies. Specifically, we are looking into what has been changed in our food supply in the last 10 years.

Did you know that about 10 years ago, companies began to genetically engineer plants like corn, soy, wheat and all of those other allergy causing foods? And that the soybean share the same protein structure as the peanut now?

We were shocked to learn this - and have been researching it ever since. You can always sign up for our free newsletter to learn more at [url="http://www.allergykids.com"]www.allergykids.com[/url] We are also working with global corporations who are using our universal symbol for food allergies to help identify these children at school, in the lunchroom, at a birthday party or an a plane. Our CNN interview on our site is a great resource to learn more.

If I can ever answer any questions, please let me know!

With hope for the cure,
Robyn
[url="http://www.AllergyKids.com"]www.AllergyKids.com[/url]

__________________

Robyn
[url="http//www.allergykids.com"]http//www.allergykids.com[/url]
1.800.671.1525

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By melissa on Fri, 01-26-07, 19:49

Mommamia,
No egg #s yet; very frustrating. I think that while it is great that there are lots of kids in the study now, I'm having to get used to less "perks", like the freebie extra allergen testing we've always gotten. They are just so busy things "outside" of the study don't get much attention...what they told me last week is that they still have the blood they just haven't run the "extra" tests, like for his egg #s. And honestly, at this point, I don't know if it matters...we go back March 6 for more blood work and I will get them to send it off.
Thanks for asking,
Melissa

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By cam on Tue, 01-30-07, 04:42

I called Duke today about the peanut powder densensitization study. It's not an option for us because we live in MN (it was ridiculous to even call and ask, I know, but what can I say). It was quickly established that my son isn't eligible based on our location, but before getting off the phone I asked when data might be published from the study. The person I talked to (and I don't know her title) said it is a ways off--she either said 3 to 4 or 4 to 5 years (I don't remember which it was--very sleep-deprived with a sick baby this week). I had been hoping that the timeline would be shorter than that. The study just gives me so much hope. Have any of you with contacts at Duke been given a timeline of when results could be published or the treatment could potentially be available to others? Just hoping maybe somebody's been told it might be sooner than this...

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By melissa on Mon, 03-05-07, 23:24

Not peanut related but our egg RAST is FINALLY back (from November)....negative!
Now, they sent this test off to another lab, so since we are going back tomorrow for another peanut dose increase and blood work, they want to be cautious and run it again in house before we do a challenge...but, I'm very very excited, and very hopeful that tomorrow's dose increase will go well and we will get more good peanut numbers soon. Will update.
Melissa

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By PennMom on Tue, 03-06-07, 01:03

That's great- I am so happy for you and your family. Do keep us updated!

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By cam on Tue, 03-06-07, 02:03

I second PennMom's sentiments! That is wonderful, and thank you so much for the updates.

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By melissa on Wed, 03-07-07, 13:01

Update: Had another Duke visit yesterday, w/ several results:
1. Peanut dose was bumped from 1200 (4 peanuts) to 1400 w/ no reaction; we will bump him up at home to 1500 (5 peanuts) in 2 weeks, then 2 weeks later go back to Duke to bump him to 1700, then 2 wks after that bump him up at home to 1800 (6 peanuts) which will be the new maintenance dose until his RAST goes below a 2...at that point we get into food challenges and other details that I can't wrap my brain around yet.
2. Met w/ Dr. Burks...we do not have to repeat the egg RAST but he wants us to wait until he's been on his 1800 peanut maintenance dose for 1 month before we challenge egg...I guess we've waited this long we can make it until the end of May, but I'm very excited to hopefully put the egg allergy behind us in the next couple of months.
3. Did peanut RAST, will post those results when I get them; did peanut skin test and they looked great...very very small red dots, and only the highest titrated level of peanut had any flare and it was very small.
4. Received an albuterol inhaler w/ a face mask/tube apparatus (spacer maybe?) to use when DS gets sick and starts w/ "that" cough...hope that will help him.

I think that's it for this visit...I'll update when we get some new RAST #s for the peanut. And they will be having another family meeting the end of April or beg. of May so I'll have more info then too for anyone interested.
Melissa

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By PennMom on Wed, 03-07-07, 14:32

Sound great- thanks for the update!

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By Adele on Wed, 03-07-07, 14:36

Wow! Four peanuts!! What a change this must be making in your lives. Congraulations.
Adele

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By doofusclo on Wed, 03-07-07, 15:20

Thanks for the update. Thanks for giving the rest of us this hope. Thanks for being brave enough to participate. Cindy

__________________

Cindy O

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By PAMomInPA on Wed, 03-07-07, 15:46

These successful results make me so happy that I literally have tears in my eyes. Thanks again for participating in this study.

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By cam on Wed, 03-07-07, 17:52

That is fantastic! I'm so happy for your family. Thank you so much for sharing and giving us so much hope. I can't wait for the day when we can pursue the same for my son.

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By melissa on Fri, 03-09-07, 17:08

We have our egg challenge set up, but I couldn't get an appt until June 5. That seems so far away, but we can make it...they faxed me the RAST results and it is so weird to see "negative" beside egg I keep looking at it over and over!
Will update when we get new peanut numbers, which will hopefully be before the egg challenge.
Melissa

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By PennMom on Fri, 03-09-07, 18:33

That's so great! It will come before you know it! Congratulations!

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By ccm'smom on Sat, 03-10-07, 22:01

I have read all 6 pages of this thread, and it is truly amazing and so hopeful!
Melissa, I have to ask, with your child's egg allergy, did you do total avoidance? Or any may contains or traces of egg? I am just wondering as my son's egg allergy seems very similar to yours, hives after scrambled eggs at age one and peanut reaction at age 17 months. He is now 5 1/2. Two yrs ago his egg RAST was 4.63, he wil be tested again this summer.
I am allowing my son traces, and just curious what you allowed. Thanks and congratulations!
Chrissy
Carter - PA, TNA, Egg and Environmental Allergies.

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By melissa on Sun, 03-11-07, 00:40

CCM,
We have strictly avoided egg, no may contains or anything (unless something I didn't know about slipped in)...it's funny b/c his pn RAST keeps falling w/ increased exposure in the study and his egg RAST has fallen to zero w/ no exposure...but I don't think much can be read into that b/c they just don't know enough at this point. Plus, his egg RAST in the beginning was only 4.something, and we were always told he would probably outgrow it before kindergarten.
So, still crossing our fingers...

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By melissa on Tue, 03-20-07, 22:56

Just a small update...
today was the day to bump DS up at home from 1400 mg to 1500 mg (equiv of 5 peanuts)...he did fine, no symptoms at all!
We stay at this for 2 weeks, go back to Duke April 4 to go up to 1700 mg, then on april 19 will go up to the maintenance dose of 1800 mg (6 peanuts).
No test scores for peanut yet.
Melissa

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By doofusclo on Wed, 03-21-07, 01:19

Wow that is great. Thanks for keeping us updated. I pray he is cured - soon!!!
Cindy

__________________

Cindy O

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By cam on Wed, 03-21-07, 11:45

That is fantastic! Thank you SO much for sharing his progress.

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By PennMom on Wed, 03-21-07, 13:34

Love to keep hearing good news! Congratulations and keep updating! Thanks!

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By mistey on Wed, 03-21-07, 14:37

That is awesome, Melissa!!

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By melissa on Mon, 04-02-07, 12:13

We go back to Duke Wednesday for the last of the "big jumps" in dosage...he will go from 1500 mg (5 peanuts) to 1700 mg (almost 6 peanuts)...I always get nervous about these visits...please keep DS in your thoughts and prayers if you don't mind...I will update after we return/hopefully we'll have his latest peanut RAST in too.
Melissa

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By cam on Mon, 04-02-07, 13:31

Melissa - Our thoughts will be with you! Six peanuts is incredible; I can't imagine how much less anxiety I would have on a daily basis if DS could tolerate that much. That is wonderful, and you really have come such a long ways!

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By PennMom on Mon, 04-02-07, 13:32

Will definitely keep you and your son in thoughts and prayers! I'm sure he will do great- it is so exciting that he is doing so well! Good luck!

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By falcon on Wed, 04-04-07, 02:49

Melissa- wishing you guys the best of luck! Hope all goes well!

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By melissa on Thu, 04-05-07, 00:21

We're back...DS went from 1500 mg (5 peanuts) to 1700 mg (almost 6 peanuts) w/ no problems...his RAST went from 3.66 to 3.0...we do this dose for 2 weeks then bump him up to 1800mg (6 peanuts) at home, and he will hopefully stay at 6 peanuts until his RAST is low enough to food challenge.
It is a lot of peanut to mix into applesauce and get in him everyday though, but hopefully he'll continue to do well w/it.

Thanks for the thoughts and kind words...I probably won't have any kind of update until August, when we go back to Duke for blood and skin testing (there may be another family meeting in May and if so I'll update then).

Melissa

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By lilanne on Thu, 04-05-07, 13:27

Melissa....thanks for keeping us updated. I'm so interested in your progress. What is your opinion as to when this would be available for all. My 6yr old DS with PA has a RAST of 22.60.

Thanks again

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By PennMom on Sat, 04-07-07, 19:47

Yeay for good news! So glad your son is doing so well- it gives me great hope to hear this study is going so well. Thanks for the update!

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By cam on Sat, 04-07-07, 23:05

Melissa - I was thinking about your family and am so glad to hear it went well. It's wonderful to hear about the progress. Thank you so much for the updates.

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By Ree on Sun, 04-08-07, 03:13

Wonderful news! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Wow, I couldn't even imagine it. You and your ds are very brave.

Do you know how others are doing in this study? Are everyone's RAST scores dropping as well?

Thanks!

__________________

Mom to
5 yr DS - PA & EA
3 yr DS - MA, EA & PA
1 yr DS - KNA

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By on Wed, 04-11-07, 22:44

Melissa,

I am so glad to see your son is still doing great with this treatment. It is so encouraging to think this treatment will be available to the masses one day. This amount of peanut tolerance would completely change *our* world!! How exciting is that?

When, I wonder, can we all jump on this bandwagon?

This is the most encouraging research out there.

Thank you, Melissa & Justin!!

Have a blessed day,
Bridget

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By mommamia8 on Thu, 04-12-07, 01:20

That is just GREAT!!! I'm so happy for you both!

What is the magic RAST number to do a challenge? Under 2? Or will they wait until 0?

So very, very exciting! Thank you both!

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By melissa on Wed, 04-25-07, 12:57

Thought I'd throw in a quick update...we bumped DS up at home last Thursday to his maintenance dose of 1800mg, 6 peanuts...no problems! Again, we stay at this indefinitely and go to Duke for testing every 4 months until his RAST is low enough to food challenge...I THINK the family meeting is next weekend, but I'm not 100% sure...if it is, I will update when we return.
Melissa

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By PennMom on Wed, 04-25-07, 13:33

Thanks for the update Melissa! Yeay for good news!

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By melissa on Wed, 05-09-07, 17:53

I promised an update from the parent meeting...lots of info and some that is hard to transfer from Dr. Burks to my ears and brain to you but I'll try my best.

General info:
1. RAST of 1-2 means 50/50 chance of passing food challenge (except in strange cases like our kids in the study...% is probably higher but no one knows yet)...RAST of less than .35 means 95-100% chance of passing challenge.
2. If a skin test result is greater than 10mm means 90% they are allergic to that food.
2a. Forgot to add, asked about shea oil and Dr. B said it shouldn't be a problem for most pn allergic...I know that is contrary to what some have been told so i think this is one of those that they will disagree on for a while.
3. Tanox/Xolair...75% study participants either had no reaction to peanuts or could tolerate up to 8 peanuts; 25% had no improvement in their symptoms; once you go off, allergies return; very expensive; looks like it could be used temporarily in conjunction w/ a pn vaccine...in other words, take shots of Xolair for 6 months to "cover" you while building up in an allergy shot type situation, then go off once you have built up tolerance on the shots
4. Other studies going on...something called fusion proteins (didn't understand, sorry); Chinese Herb (looks good, looks safe, human studies in next 2 years, some FDA approval problems trying to make sure it is standardized)' Engineered Recombinant Protein (the "vaccine")-made a "new peanut" without the allergenic part, treat w/ it so body recognizes peanut w/out reaction, first adult study next year at NY and Hopkins, will be dosed rectally...no different than our study except you get less IgE binding, so less side effects; SLIT (under the tongue)-same as our study but dosing is different, doing now at Duke and ?
5. Our study... 27 in peanut study, 15 in egg-can the same treatment that causes desensitization cause tolerance...looking at the blood in the lab to determine...ours is the pilot study, open uncontrolled pilot study...lead to the new study which is a randomized placebo controlled study...enrolling now, want 60 children (20 get peanut, 10 get placebo, 30 are just for control), ages 1-6, 10 month build up phase to 4000 mg (13-14 peanuts)...our study is only to 1800 mg (6 peanuts)...after the 10 months the "seal" is broken and those who got placebo will start over w/ the peanut

Back to our study...
RAST examples from beginning to 33 months:
155 to 10, 84 to 20, 23 to 1.3, 41 to 5, then those at 28 months 9 to 1.7, 257 to 18, then at 24 months 22.6 to 3 (us), 26 to 8.7, 401 to 173.
Globally, the mean IgE went from 60-70 to around 20 at the 24 months mark. The patterns look similar to what happens w/ ragweed therapy (shots) but just takes longer. 3 children quit the study and their IgEs stayed the same or increased.
Next phase of our study...when child has IgE under 2, they will do a food challenge up to 13 peanuts. If they pass, they will stop their daily pn dose for 2 wks and repeat the challenge. If they pass, they will be no longer allergic but they will need to eat at least 1 tbsp of pn daily for at least a year (probably longer) and will be followed yearly at Duke. If they don't pass at either point, they will be put back on the safest highest pn dose and return in a year.

That is a ton of info and thank you to anyone who actually reads all of it. I'll try to answer any questions that I can.

Melissa

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By mistey on Wed, 05-09-07, 19:04

Oh, I read it. And read it again. And again. Thank you so much for posting all this, Melissa. I really appreciate it.

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By PennMom on Wed, 05-09-07, 19:49

Thanks so much for posting all this! Also glad to hear everything is still going great! Thanks again! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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By lilanne on Wed, 05-09-07, 23:34

Melissa,
First of all thank you so much for the info...I want you to know that I really appreciate hearing about your son, and feel strenthened with hope each time I read your updates....

you wrote about the Tanox/Xolair study, and I was wondering when he (Dr. Burkes) thought that study would be complete and available.....

The last thing I wanted to ask was if there was an email or website that I could go to to ask Dr. Burkes for an allergist in the Houston area that he would recommend.

Thanks much and best of luck

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By cam on Thu, 05-10-07, 00:27

melissa - I will be reading this multiple times as well. Thank you so much for sharing this information and the wonderful updates on your family. It is greatly appreciated!!!

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By kcjenn on Thu, 05-10-07, 03:06

That's so awesome!

You mentioned that they are enrolling now in the new study (for ages 1-6?). Do you have any information on how to contact them about this study?

We may be interested--we don't live *too* far (Atlanta) and my ds is 5.

Thanks,

~Jenn
DS Ryan, 5, PA
DD Morgan, 2, NKA

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By multiallergymom on Thu, 05-10-07, 03:07

Hi Melissa,

Thank you so much for posting all of this information. And thank you for participating in this trial. A simple thank you doesn't seem to do justice to the way I feel, so please know how much we appreciate all you are doing.

Is Dr. Burkes seeing any correlation between age and the amount of reduction in rast scores, or how fast the rast numbers reduce?

Also, if we are interested in enrolling our child in the coming trial, who do we contact?

Thanks again!

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By melissa on Thu, 05-10-07, 11:54

Some answers...
*to inquire about studies available to enroll in, call 919-668-1333 and ask for Pam or Jan. I know Dr. B has an email addy posted somewhere on the Duke website but I don't know what it is...but that # should get you the info you need
*Xolair-no timeframe mentioned...it is available now for severe asthma I believe, but not approved for pa
*Dr. Burks did mention that there is a theory that the younger the child is when they start desentization therapy for food allergies the better the results, which is why the new dbl blind placebo study is for ages 1-6, but he also said that those w/ older kids should not worry about this b/c it still seems effective, just may take longer

Hope this helps!
melissa

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By mistey on Thu, 05-10-07, 13:20

I have always wondered about those who do not have as high of RAST numbers and how the treatment would work for them. My ds's RAST is only .40 but he has ana reactions just as severe as those >100. But he would not be eligible for the study as the parameters currently stand.

Any insight on this, Melissa?

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By bethc on Thu, 05-10-07, 13:34

Amazing. Do you know if the 3 children who discontinued it did so because of adverse reactions or just other factors, like time or travel distance?

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By melissa on Thu, 05-10-07, 14:09

Mistey,
I don't have any info on that, but if I were you I would email Dr. B directly if you can find the email (sorry I don't have it) or call Pam or Jan at 919-668-1333 and see if they can't get an answer for you..

Bethc,
Dr. B didn't give any reasons for the 3 who dropped out, sorry.

Melissa

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By amartin on Thu, 05-10-07, 14:20

Thank you so much for the update. I too read your posts over and over. They give me hope when things look hopeless...

I know this has been asked before, but do you know if plans for studies in other places are underway? We are on the West Coast.

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By niche on Thu, 05-10-07, 20:29

Thank you so much! If you had it to do over would you? Would the increased ramp to 4000 in 10 months scare you? Out of doing it?

Nichele

DS 5 PA TNA
DD 10 mons ?????

__________________

Nichele

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

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By Taylor's Mom on Tue, 05-15-07, 01:24

Thank you Melissa for your posts - I have been reading your stories for a while and want to congratulate you and ds on your bravery and for passing on this info - it does give me hope... Will be asking my allergist if they will be looking at any studies like this is Canada?

Mom of Taylor - 6 - PA and Ainslie - 2 NKA

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By melissa on Tue, 05-15-07, 19:00

Amartin---I don't know of anything on the West Coast...right now it is at Duke, Arkansas, and Johns Hopkins (at JH maybe just milk, egg, not sure)...

Niche---would it scare me? not necessarily scare me, but it is going to be more of a time commitment, and I just can't imagine getting that much pn powder into the kids...I have a hard enough time mixing up 1800 mg and getting him to take it daily...he doesn't mind the taste anymore, but he has to have food on his stomach before taking it and sometimes he just doesn't want anything to eat.
and there are days when I just feel like I dont want to do it anymore...don't want to drive back to Duke, don't want to dose him, don't want to be paranoid for 2 hours after his dose, but I can push all that out of my mind when I think about what this is going to mean to him...
would I do it again? yes
would I do it again up to 4000 mg? yes

Hope this helps...
Melissa

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By niche on Wed, 05-16-07, 17:15

Mellissa thanks so much for your reply! I really appreciate all that you are going through. What you are doing means so much to so many. And I think it is so wonderful of you to take the additional time to post and answer questions here.

Thanks again,
Nichele

__________________

Nichele

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

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