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invited to participate in research study

274 replies [Last post]
By LuvMyKids on Sun, 06-26-05, 23:01


Thank you so much for explaining this to me. I have a six year old who is also really really allergic to milk in addition to peanuts. I'm actually more interested in doing this for milk just because accidental exposures to milk are really hard to avoid. I've heard they are doing this with milk as well as peanuts??

We are having my dd tested in October, and if her milk score is still >100 I would really consider this. I'm about six hours from Duke so I want to see what my dd's scores do this year and also continue to watch the study until then.

It sounds like it is going great! Do you know if anyone has had bad reaction during the course of the study?

Thanks so much for answering my questions.


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By melissa on Mon, 06-27-05, 13:40

I know they are doing a study w/ eggs at Duke but not sure about milk yet.
The worst reactions have been on the first day...every child has had some form of reaction that day, some hives only, some vomiting, some (like my DS)throat closing...it was extremely scary, but I think he is the only one that had the epi (all others had benadryl) and the reason he had epi is that his IV wouldn't work and we could not get the benadryl in his IV or his mouth (he was crying). After the first scary day I think no one has had a "bad" reaction...some hives here and there, a tummy ache, an itchy mouth. We've had a few hives a time or two but as my DS is "hivey" in general, we're never sure if the study is the cause or not.

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By melissa on Thu, 07-07-05, 18:26

Just my regular update here for anyone who's interested:
DS is now at 150 mg daily, roughly the amount of 1/2 a peanut. He had to have a blood draw today, which he did not enjoy obviously, but other than that all went well.
I don't have any specifics (and won't have any on DS's numbers for a while) but all of the patients who have been in the study a year have seen a drop in their peanut specific IgE...the drops were not immediate and in some cases took almost to the one year point before a change was noted. Will give more info as I get it.

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By sorensmom on Sun, 07-24-05, 05:26

I want my son to participate in a study like this. Would anyone know how, in Minneapolis, MN?

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By ktmom on Mon, 07-25-05, 04:19


Hope the numbers from the blood test are as great as the rest of the news.. Thank you for taking the time to post the details.

Does the study use a modified version of peanut allergens or regular peanuts ?

Came by the following link....


It states that "The consortium's first project will be a clinical study to evaluate a potential peanut allergy therapy. This potential therapy is expected to work in much the same fashion as allergy shots in which allergic individuals are given increasing doses of an allergen. The shots stimulate an immune response that protects against future allergic reactions. The existing approach, however, cannot be used in people with peanut allergies due to the risk of life-threatening reactions. To overcome this barrier, Dr. Sampson and Wesley Burks, M.D., of Duke University, Durham, NC, developed modified versions of peanut allergens that have been shown to be safe and effective in animal models."

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By michaelsmom on Mon, 07-25-05, 14:08

sorensmom - I thought I heard that the study was offered at the Mayo Clinic in Rochester. I don't know how to confirm this.

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By melissa on Thu, 08-04-05, 20:19

I've gotten behind w/ my updates, but as of today DS is taking 200 mg per day. He eats ground up peanut, kind of like peanut flour. I wish I had some #s to report but I really don't. The only thing they said today is that w/ the kids who have been in the study over a year, there is an initial increase in the IgE # and then from there it drops and continues to drop. Right now they are deciding whether 300 mg (one peanut) is enough or if the kids need to go higher. It is very hard to not know all that is going on, but I guess we will sooner or later. All I know is that DS eats this amount every day and has no reactions, and his throat closed on 12 mg the 1st day.
I don't know about other sites for this study but could give anyone interested our study coordinator's phone number and she might be able to help.

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By on Fri, 08-05-05, 19:39


Thanks for the update. This is so amazing. This is hope for someday having a treatment or *dare I say* CURE!

Thanks for the update. We will patiently *cough* await any numbers you get in the future......

Have a blessed day,

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By Ree on Sat, 08-06-05, 02:08

Thanks for posting you ds' progress Melissa!!

I'm always checking for your updates and you should know how much we appeciate what you both are doing! Thank you! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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By elizp on Wed, 08-17-05, 21:04

Melissa, did you just have 1 rast test done on Justin before proceeding or did you wait for a couple of tests? My son is 15 months old and was off the charts PA but allergist says that he's seen remarkable things happen on RASTS.

Also, does any one know if they've started trials in Baltimore? I called the number listed on the press release and they havent started in NY yet.


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By melissa on Thu, 09-01-05, 22:16

Here's my semi-regular update: DS is now on 250 mg of peanut a day and we have 2 more trips until we're on the maintenance dose of 300 mg daily. We talked to Dr. Burks today and he said that the decision on whether to stop at 300 mg or keep going up will be made patient by patient and no decisions will be made until the 1st group hits the 2 year mark in February. Once a patient has hit the 2 year mark, if the numbers support it (RAST below 2, less IgE cells to peanut, and skin test improvements) a food challenge will be done. If the numbers are not low enough, the patient can stop at that point, continue on the 300 mg dose, or keep increasing the dose and track the numbers. We still don't know exactly what DS's numbers are, but hope to have more info after the last regular appt Sept 29 (wish us luck please). The trend w/ all the patients though seems to be that their #s initially rise, then at the 6 month point almost all are cut in half...not sure what happens after that (I think some continue to fall and some stay the same, but I'm not 100% positive). I forgot to ask him about the new "shots" study he is starting and will try to remember to get details of that next time. We are also checking the egg #s next time, and would be thrilled to get good news on that as well.

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By 2BusyBoys on Thu, 09-01-05, 23:01

Good luck to you and your DS. Thank you for the updates and most of all for participating in the research!

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By melissa on Fri, 09-02-05, 00:31

Just realized I never answered you...so sorry.
DS had a neg spt for peanut when he was 9 mos old (and tested pos for egg); at 15 mos following the pn rxn he had a pos spt. His first RAST was at 2 at Duke in February and it was a 25.3 (CAPRAST). He had another blood test done in April and in June (both tied to the study) and we don't know those results yet (they are looking at more than a # w/ these, looking to see what the IgE cells do in response to pn). Dr. Burks told us that if your caprast to pn is above 15, you have a minute chance of outgrowing (not impossible, but not great odds either).
Hope this helps,

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By mistey on Wed, 09-07-05, 00:40

Just said a little prayer for you and your son. I follow your posts often, hoping that someday there will be hope of a cure for all our children with PA. I'm so pleased to see him doing so well.

Take care,

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By melissa on Wed, 09-21-05, 18:16

I'm wondering if I should start a new topic after next week...this one's getting a bit long. Any thoughts?
Next Thursday is the LAST of our every 2 week 3 hour one way trips to Duke!!!!! After that, we will go every 3 months, until/unless they decide to offer us the option of going higher in milligrams next spring (based on lab results). After next THursday, Justin will be eating the equivalent of a peanut every day. He has to have blood taken next week though, and that is not a good experience for him. I won't have much to offer in the way of updates after that, but will share any info i get. I still don't know if this research study is working...all I do know is that he can tolerate one peanut daily...I'm hoping for the best w/ the results, and hoping to for a low egg # this time (last time it was 4.07).
Thanks for all the well wishers and for the interest.

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By LuvMyKids on Thu, 09-22-05, 15:01

I agree, keeping the history is probably a good idea at this point...even though the topic seems really long.

I know that a lot of people are reading and keeping tabs on this thread so I hope you will keep the updates coming.

One peanut sounds huge to me. I'm so anxious to hear what the RAST Results look like for this. It is so interesting.

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By Peg541 on Thu, 09-22-05, 17:15

Wow, be careful what you wish for... One peanut means my son can make a mistake or that he can sit in a theater while others are eating peanuts. Or he can fly. A miracle in my eyes.

Congratulations and some day your son will thank you for the blood tests.


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By luisa on Thu, 09-22-05, 20:55

Melissa, thank you so much for keeping us informed but most of all for doing this.
It's not only for your boy, it's for all of us...

Hope is a great word. I don't care about my son having peanuts on his diet but not having to worry about accidental ingestion anymore would be a like a miracle to me...

Best of luck to you and your son!


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By melissa on Fri, 09-30-05, 12:07

We are back from our LAST every other week trip to Duke and it went very well yesterday. He is now eating 300 mg of pure ground up peanut (equal to one peanut) a day. He had a RAST and did much better w/ some EMLA cream to numb the area (still cried but he's only 2)...we will know the egg number next week and the peanut will be run w/ the rest of the study kids so that may be a month or so before we get anything back on that. By next April or May if his numbers are not low enough we can go back and go up to 2 peanuts, w/ less trips though. They are thinking of going up by 50 mg once a month. As of now we simply go back every 3 months, and there will be more blood and skin tests next March and then next September.
The really encouraging news is his skin test. They repeated a titrated test which they had done in the beginning of the study. They put a full strength of peanut, a slightly diluted strength, then 3 more diluted strengths (5 in all w/ it going from highest strength to lowest). They put scotch tape on them after they react and trace the wheal and the flare, then transfer the tape to their notebook for a side by side comparison w/ the results from 6 months ago. They told us not to be disappointed if no big changes. He did not react at all to the 3 lowest strengths (just a tad to #2 but we're not sure why) where he had reacted in April. He did react to the 2 highest strengths but they were noticeably smaller than 6 months ago. We were told not to read too much into this, but of course I am!
So, I will update about the egg, and any more info that I get, but there won't be anymore bimonthly updates (and my gas budget will go back down thank goodness!).

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By mommyofmatt on Fri, 09-30-05, 14:08

Yeah Melissa, glad you completed the first part of the study successfully!! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] And, I'd be encouraged by the skin test too [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Thanks for posting all about your experiences, it sounds like a long but possibly very rewarding journey for you all. And, it gives us hope. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Meg

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By Luc's Mom on Fri, 09-30-05, 14:10

The really encouraging news is his skin test. They repeated a titrated test which they had done in the beginning of the study. They put a full strength of peanut, a slightly diluted strength, then 3 more diluted strengths (5 in all w/ it going from highest strength to lowest). They put scotch tape on them after they react and trace the wheal and the flare, then transfer the tape to their notebook for a side by side comparison w/ the results from 6 months ago. They told us not to be disappointed if no big changes. He did not react at all to the 3 lowest strengths (just a tad to #2 but we're not sure why) where he had reacted in April. He did react to the 2 highest strengths but they were noticeably smaller than 6 months ago. We were told not to read too much into this, but of course I am!
So, I will update about the egg, and any more info that I get, but there won't be anymore bimonthly updates (and my gas budget will go back down thank goodness!).

really awesome news- i'm a newbie to this PA thing, but i've been following your posts..

a question, since i'm still learning alot, when an allergist does a skin prick test, what strength is normally used?

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By EmilysMom on Fri, 09-30-05, 15:02


Wonderful news. Your experience is helping me deal with the emotional issues of Emily's study.

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By melissa on Fri, 09-30-05, 19:02

Luc's mom,
That is a really good question. It seems like I know the answer but honestly can't recall...maybe someone else here does though. I will also ask at Dr. Burks office when they call w/ the egg results.

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By luisa on Fri, 09-30-05, 19:51

Great news! Your journey means hope for us and I am glad everything is going well. I would also be happy about the skin test, it is hard not to get encouraged...

It is definetely a good time to save some gas...



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By melissa on Fri, 10-07-05, 18:16

well, I'm still cooking everything unfortunately. DS's egg RAST has not changed, still around a 4.6 or so. But I'm trying to tell myself he's only 2 and most kids who outgrow egg do so before age 5, so maybe next time.
They are running lots of tests on the blood for the peanut study and I may not know anything more until December. They are encouraged by his skin tests though. So we'll keep on w/ what we're doing, 300 mg a day for now.
Will update if there are any changes.

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By MommaBear on Fri, 11-18-05, 20:02


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By melissa on Fri, 11-18-05, 22:14

Our next appt is Dec 19...may get some info then.
Then, all parents and children in the study are meeting at Duke Jan 7 w/ Dr. Burks and his assistant to go over where we are and where we're going. There is some talk of offering to us the opportunity to go higher than 300 mg (1 peanut), if we choose to. It would mean more trips to Duke over about a 6 month period again (maybe only 1x a month though instead of 2x a month)...if results so far look good, I'm sure we'll agree to go higher...we've come this far, no reason to turn back yet.

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By melissa on Fri, 12-16-05, 20:33

Dr. Burks' assistant just called w/ DS's RAST IgE's...
April 2005 (before we started the study) his peanut IgE was 25.3
June 2005 (3 months into the study)
his peanut IgE was 51.7 (scary, I know, but this holds true w/ all the kids in the study, every single one of them goes up at the 3 month point)
Sept 2005 (6 months in)
peanut IgE 25.6 (again, at the 6 month point, all the kids drop by about 1/2 of what they were at the 3 month point)...
so, we're essentially back to where we started, BUT if DS does like all the other kids, every single one drops by 40-50% at the one year check...that would mean when we go back in March he should be at about a 12-14. It looks like Dr. Burks wants to now go up higher, feeling that if we go higher now, we can get the numbers lower quicker. I will know much more after the big parents meeting w/ Dr. Burks and staff at Duke January 28.

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By melissa on Fri, 12-16-05, 20:35

I forgot to add I just think it is so interesting that every one in this study is following the same pattern...I guess it makes me feel a little better, that it might actually work. I was told today that a girl who started w/ a RAST of 150 is now down to 30 (she's been in the study a little longer than us)...still obviously allergic, but it is going down. THey said the kids that have been in longer continue to have reduced RAST numbers, but they want to get them down lower and quicker.
*Edited to say if you only click on page 3 of this thread, go back to the last post on page 2 or this one will make absolutely no sense LOL

[This message has been edited by melissa (edited December 16, 2005).]

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By ktmom on Sat, 12-17-05, 00:27

Great numbers Melissa...I hope your DS continues to lower and lower numbers...Our prayers are with you. Thanks again for taking the time to share your experience.

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By melissa on Wed, 12-21-05, 01:12

A mom of another child in DS's study called today...she has been in the study almost a year longer than us. Her daughter's RAST at the beginning for pn was 72 and it is now 13! They are very excited! After the big parent meeting Jan 28 I will post all the numbers for everyone.

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By LuvMyKids on Thu, 12-22-05, 21:17

Wow. That is so amazing. I can't wait to hear about your meeting.

I'm so glad you are posting all this.

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By forJacob on Thu, 01-05-06, 19:45


I love following your thread and it gives me a lot of hope. Based on what you've seen, do you think this could mean that "complete avoidance" route might *not* be the best way to lose an allergy?

Please don't burn me if there are people out there who totally disagree with me. I am not advocating PA people expose themselves to peanuts. But could one of the conclusions of the study be that "If it doesn't kill you, it can help you?"

Of course, the problem is finding the right dose of peanut that it will not be lethal and can "strengthen" the immune system. Is this what the study is doing?

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By dgood on Fri, 01-06-06, 02:44

I recently read this entire thread and am so impressed by you. You seem like a take-charge kind of person and it looks like your son will benefit greatly. I hope this study is really onto something permanent, like a cure or at least an ongoing tolerance to peanuts.

Please keep updating us...I plan to check in from now on. Great job and thank you for documenting your experiences for all of us.

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By melissa on Fri, 01-06-06, 13:25

"Based on what you've seen, do you think this could mean that "complete avoidance" route might *not* be the best way to lose an allergy?"
Well, that's a tough one to answer, but my gut reaction is to agree w/that...however, like you said, it has to be in a very controlled situation...I think we'll know more at the end of this study, and maybe know more in a few months as the first kids hit 2 years in the study.

"Of course, the problem is finding the right dose of peanut that it will not be lethal and can "strengthen" the immune system. Is this what the study is doing?"
yes...this is supposed to be just like shots (which at this point are too dangerous for PA) but this works through the gut...the same way you cure someone of an antibiotic allergy, by slowly increasing the amount of antibiotic you give them until their body learns to recognize it as "ok" and not react...the problem now is finding the right dose. All the kids in the study have reduced their RAST #'s and their skin results. But they are still allergic, we think, even though they can tolerate 300 mg of pn a day. What I think we'll hear at the parents' meeting on Jan 28 is that Dr. Burks would like to go up higher, maybe faster, thinking that that will push those #s down lower, quicker.

Thanks so much for your kind words. There are some days when I feel like I've made DS a guinea pig and I don't feel so great about our decisions on those days, but all in all I do think this is the best there is right now...I truly believe in Dr. Burks and I am impressed w/ the results so far...I will keep updating for anyone interested...next update will be after the Jan 28 parents' meeting.
Thanks again,

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By LuvMyKids on Mon, 01-30-06, 14:08

Hi Melissa!

How did the meeting go?

[This message has been edited by LuvMyKids (edited March 05, 2007).]

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By melissa on Mon, 01-30-06, 17:01

Hi everyone,
I'll try and give as much info as I can remember and will try to answer questions but keep in mind "I'm not a doctor, just a parent" and I'm sure I'll say something not quite correctly.
The meeting was very good. Dr. Burks gave a really good "what is food allergy" info session and I probably know more now than most allergists! Then he spoke specifically about the study and it's 2 goals:
1. Desensitization, cause the body to be less sensitive to pn, so that if they react to 1/100th of a pn, can we make them only react to say 6 pns? AND
2. Tolerance, make it go away, make the body no longer make IgE to pn.
He reminded us you can be desensitized and not tolerant (much like if you were allergic to cats but took shots and could be around cats more, but you still are allergic). Right now, Dr. Burks considers the children in the study to be desensitized to peanut, but not tolerant. They can all handle a minute amount (up to and maybe more than the 300 mg a day they are getting) but they are still allergic (so obviously we're not changing the way we live just yet). So, 300 mg (1 pn) does not make them stop producing IgE, but it would keep them from having a massive reaction if introduced to a trace amount of pn in an accidental exposure. This finding is based on three tests:
1. titrated skin tests (where they use different strengths of pn)...the children are now not reacting to the lowest strengths and are having smaller reactions to the higher (usually higher 2) strentghs
2. Cellular flow...I don't really understand this but they take the cells and separate and identify them and see what they do in the presence of pn
3. Peanut IgE and IgG
Dr. Burks said that at some point around 100mg, the kids stopped having any kind of reaction on new doses (no redness, no hive, etc). I didn't get to finish copying down all the RAST numbers, and everyone's numbers initially go up, but then go down, but here is a sample from beginning of study to 18 months later:
155 to 36
84 to 36
23 to 7
41 to 13
Here are some that are just at the 6 m point:
257 to 172
23 to 25 (this is us but we should follow suit and drop by at least 1/2 in March at the 12 m point)

I am very pleased w/ the results so far and am ready to do the next phase. Dr. Burks wants to go up higher, even as far as 1800 mg (6 pns) and see if we can get tolerance. This will obviously be done very slowly again (so more trips to Duke over the next year).
But, worse case scenario is that my DS will have to take some dose of pn daily forever, still can't actively go out and eat pn, but he will be covered in case of an accidental exposure. We can live w/ that!
I'll try to answer any questions that you have and that I can.

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By andy k on Mon, 01-30-06, 18:48

wow - thanks so much for the update!! It's been said before, but can't be said enough -I admire and appreciate your and your family's bravery, selflessness, generosity, and willingness to post and keep us informed of progress. I'm delighted that the study seems to be benefiting your DS - continued hopes and prayers for more good news as you go to the next phase of the study.


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By forJacob on Mon, 01-30-06, 21:04

I can't put it in better words than Andy.
Thank you very much for the very encouraging update.


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By jsmom on Tue, 01-31-06, 17:54


Thank you so much for keeping us informed about the study. I'm so glad your little one is doing so well. I wish the study was available when my son was young. He's a teenager and I worry more now than ever.

Did Dr. Burks say anything about the sublingual immunotherapy (peanut drops under the tongue) study he's starting?

Thanks again.

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By C on Tue, 01-31-06, 19:18


What is the unit of measurement for the RAST #s you are quoting? My ds RAST is >100. Are there any children with RAST #s this high? Or are they all "low" RAST #s?

Thank you for sharing.

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By vlcarnes on Tue, 01-31-06, 19:29


I'm absolutely thrilled for you and your family!! I'm the mother of the severly PA daughter currently on sublingual immunotherapy with the La Crosse, WI clinic. Her numbers came down below 100 this past December, and so, I have to say I'm not surprised at the results you posted. Best of luck and please, keep posting!!!!!

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By melissa on Wed, 02-01-06, 00:36

Let me try to answer the last 2 questions.
1. Sublingual (SLIT) therapy: Dr. Burks is enrolling patients for this now, ages 6-35, w/ a pn caprast of above a 7 (I think). This study will be done much the same way ours is.

2. The #s above are from Immunocap Caprast scores (did I say that right?). Yes some of the kids started out w/ high #s like:
155 RAST is now 36 (at 18 mos in the study)
84 RAST is now 36 (at 18 mos)
257 RAST is now 172 (at 6 mos in the study)
There is a child in the study who started at 406 RAST but he has only been in it just at 6 mos and his hasn't started to come down yet (should by the 12 mos point).

They still want more people in the study...I believe our study requires children age 1-9 w/ a CAPRAST to pn of 7+ and a clinical reaction in the past. And then the sublingual study as I said above is for age 6-35 w/ the same rast. If anyone is interested, I'll give the ph # for Dr. Burks assistant off board. I believe they have to have a certain number of patients in the study to be able to publish the results.
Any more questions, I'll try my best. I took lots of notes!

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By luisa on Wed, 02-01-06, 01:11

Melissa, thanks for the work and courage. And for keeping us updated on your journey...


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By vlcarnes on Wed, 02-01-06, 13:40


I would love to see if I could enroll my daughter in one of the studies. I don't know if she'd qualify for the SLIT even though she has already been on the therapy for 2.5 years because she's only 5. However, I'd be interested in your study. I would love any contact information on how to contact Dr. Burks' team.

Thank you.

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By StartingOver on Wed, 02-01-06, 15:05

We have an appt. with Dr. Burks in March. I am really looking forward to it. You can find his contact information here.


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By mistey on Wed, 02-01-06, 17:10

I've been totally dealing with my son's issues and have been cut off from the real world, so I may be confused. I thought that I heard that all the trials have been stopped. Was that for something else?

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By melissa on Wed, 02-01-06, 20:19

The Xolair trials were cut off...our study is completely different.

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By michaelsmom on Wed, 02-01-06, 21:38

I would like to also add my thanks to Melissa for participating in the study and keeping us updated as to the progress.

I called Duke to find out more about the studies they are working on. They are working on 2 - the oral immunotherapy that Melissa is in and the sublingual immunotherapy study they are about to start. My son is not a candidate for either since there must be a history of ingestion of peanut and I can't say that my son has actually ever ingested a peanut or peanut product.

I tried to find out a bit more about their thoughts on the sublingual immunotherapy (SLIT). She didn't say much except that it is being used extensively in Europe and at a clinic in Wisconsin (Allergy Associates of LaCrosse). Dr. Mary Morris from Allergy Associates of LaCrosse is involved in the Duke study. I have an appointment with Dr. Morris in a few weeks to discuss starting my son on SLIT. I was hoping to get a feel for Dr. Burks thoughts on the treatment, but I guess since he hasn't begun his study yet it is too soon for him to have many thoughts on the subject.

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By TarHeelMom on Wed, 02-08-06, 00:50

Hi! This is my 1st time posting on this board. My 5-year old son has a peanut allergy and we are getting ready to start our participation in the research study done by Dr. Burks at Duke University.

I have to admit that reading these message board postings, especially those by MELISSA, have helped us make our decision. However, I will also admit I am scared to death of the initial visit to Duke when they will actually "expose" him to peanuts again.

I was hoping someone on this board that has already gone through this phase in the study could walk me through the 1st day process -- ex. how their child responded to the doses, how "long" the day ended up being, what their child's reaction was like, etc.


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