invited to participate in research study

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By melissa on Tue, 02-15-05, 12:54

Ok, this will be long, so forgive me up front. I've debated strongly on whether or not to post here. You see, I don't post a lot for fear of getting slammed. I have very few people I can talk to about PA and while sometimes I get scared reading this board I often get very good info. So here goes, and please when you're responding, take into account that I'm bringing this info to you to get your thoughts and see if you have other pros and cons that I hadn't thought of. My DH and I will ultimately make the decision. I also thought you would like to know about this research that is going on.
DS saw Dr. Wesley Burks last week at Duke. He is supposedly in the top 5 of docs working on PA. We were invited to participate in his study (the same one that Brooke, "benmadwood", is doing). Justin's caprast for peanut is a 25.7. Only those w/ a 15+ are entered into the study. Dr. B said w/ a 15+ you have a 95% of reacting to an exposure, and below a 15 the research isn't as clear cut. He also said w/ a 25 he has very little chance of outgrowing on his own (I can't remember what the cut off was for this and I know some of you would like that info...it may have been 15, or 5). We are struggling greatly w/ this decision. Here's how it would work:
First of all, this is made possible b/c Dr. B and other docs isolated the protein(s) in PN that cause the allergy. DS would get an IV (for emergency admin of epi if needed). He would get a tiny amount of peanut flour mixed in something like applesauce and be watched. Each 30 mins the amount would increase until he reaches 50 mg. If no reactions, he would leave, come back the next day and get the 50 mg again. Be watched, then go home. Every day for the next 2 wks we give him 50 mg. Each 2 wks for 3 months we go back and get an increased amount, are watched, and repeat for 2 wks. At the end of 3 mos he should be at the maintenance dose of 300 mg, the amount equivalent to about a peanut. Dr. B said most accidental exposures amount to less than a peanut. We would have blood taken every 3 mos for the remainder of 2 years. The possible outcomes are:
1. no benefit
2. ability to have an accidental exposure w/out a "major" reaction
3. no longer peanut allergic
This is supposedly safer than injections b/c it works in the gut (where reactions initiate I believe)...this is also the way people are "cured" of antibiotic allergies...they "eat" increasing amounts of the med until they no longer react. So far, there have been no serious reactions, w/ the worst being vomiting. No one has had a bad reaction at home, and the ones who did react at the first visit (vomiting) w/ a very small amount of pn flour are not reacting now on the highest maintenance dose.
Let me just say to you that I would not want anything to hurt my son. But it's very tempting to give him the chance to get rid of this constant fear that hangs over our family. The study is free, and we can stop at any point.
My pros are obvious. My cons/questions are the following:
1. what if he has a bad reaction?
2. what if this doesn't work and keeps him from outgrowing (even though we're told he has little chance of that)?
3. how traumatized will he be from having an IV and the blood tests?
4. putting him through this and it doesn't work
5. I will have to drive him 3 hours each way for these appts (the least of my concerns, but it is a factor)
6. It just seems too simple...eat a little peanut flour and get rid of the allergy?
I really hope I get some more pros and cons from you...as I said, I struggled w/ posting this b/c I don't want to be told in effect that I'm a bad mom for even considering this. But when no one else around you has a clue what you're dealing w/, this is the only place where I can come to.
Sorry for the length, but I wanted you all to have all the info I do, so you can give me your thoughts and plus so that you'll know what is going on in the world of PA research.
Thanks in advance,
Melissa

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By Peg541 on Tue, 02-15-05, 15:52

Melissa, first off I am sorry you are afraid to post. Stick around, give it a try. I doubt you'll get slammed.

Although lots of us have varying opinions about this kind of study so you might get lots of strong opinions which we welcome here so be prepared. But the opinions will help you make your decision.

Somewhere here on the bulletin board is someone who did this same study, I THINK. And had very good results.

Try a search, use the words research study or Duke University and see what you get. I know my first response to her query was something like NEVER but my last response to her was BOY I WISH MY SON HAD BEEN THERE!

I remember thinking Duke University was a place that certainly would not carry out a research study under bad conditions. They seem to be the place to be.

So here goes, after knowing what I know about the other person who did this, and knowing how much I want my son to GET RID OF HIS PA I would JUMP at the chance.

That's just me. Things happen in any research study and you have a BIG decision to make. Please don't use my words as gospel. If push came to shove and my son said NO WAY then we would not do it. He's 20 so we certainly would respect his wishes.

Good luck. Oh once Alison sees your post she will have lots to say, I believe she did something similar.

Peggy

__________________

Peggy

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

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By ajinnj on Tue, 02-15-05, 16:17

I do have a lot to say, but not a lot of time. I'll post my opinion later today or tomorrow.

Also, linking [url="http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000146.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000146.html[/url]

Allison

[This message has been edited by ajinnj (edited February 15, 2005).]

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By Peg541 on Tue, 02-15-05, 16:56

Thanks Allison, that is the link I wanted to send Melissa to.
Peg

__________________

Peggy

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

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By ajinnj on Tue, 02-15-05, 18:25

Hi Melissa,
I have a few questions for you. First, how old is your son? Will he be required to have an IV everytime he is given a new dose of peanut protein? Also, I just want to make sure I understand how the study works. The first two days, your son will be given increasing amounts of peanut protein (max 50 mg). This will be done in the hospital. After that, you give him 50mg for 2 weeks at home. Then back to Duke to get a higher dose (which will then be given for 2 weeks at home), etc.

The reason Peg pointed me out was because I have been in the tanox peanut study for the past 3.5 years, so I have first hand experience of what it

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By melissa on Tue, 02-15-05, 20:23

Peg and Allison,
Thanks for your thoughts. I have spoken w/ Brooke (Benmadwood) and am encouraged by her daughter's progress in the study.

To answer your questions:
1. Justin is 2. Not old enough to decide for himself, which is another issue for me. However, my 7 year old (no food allergies) who is petrified of needles said he would do it in a heartbeat if he could "eat anything I wanted".
2. The IV is only for the first visit. No more after that.
3. Allison, you understand the mechanics of the study correctly. Each time we return for Duke for a higher dose, he will be observed for 2-2.5 hours before going home.
4. From what I understand there have been no reactions at home. The only reactions I believe (and I'll get this clarified) have been on the 1st day when going from .1 mg (I think) to 50 mg and the most serious reaction was vomiting and some hives.
5. One of my questions for the doctor (on my list of many) is what protocol would I follow at home in case of a reaction, including who to see locally if need be in an emergency (I would want that person to be up to speed on what we're doing)
6. I think when I tell myself that the first visit will stink, then I just have to get him there 6 more times in 3 months, after that only once every three months, I can get past the travel issue. They would see us around lunchtime so that I can make it in one day, except of course for the first visit, which is 2 days.
7. I think as you do that this is the same principal as allergy shots, but the thinking is that by doing it through the gut rather than an injection cuts down on the serious side effects, but will hopefully provide the same benefit.

Allison, I think you're very brave to have done the Xolair study. I wish my son were old enough to make this decision himself. We're not rushing into anything, but it is on our minds constantly.
Thanks again for your input.
(and Peg, it's not so much that I am really afraid of getting slammed, I think right now my nerves are just very much on edge and I'm a little more "fragile" or whatever you want to call it; thanks for the help!)
Melissa
By the way, at this point, my son does not have asthma, and had very mild eczema as an infant, which now only crops up occasionally in one spot.

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By Peg541 on Tue, 02-15-05, 20:30

I tried to find a study of Xolair to get my son into, with his blessings. I sat there and cried on the phone when they told us there were no studies in our area or even close enough for him to tough it out.

I wish you luck. It's a tough decision to make.

And Melissa, I TOTALLY understand the fragile.

Peg

__________________

Peggy

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

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By sherkelsey on Wed, 02-16-05, 01:47

Hi Melissa,

My son is also 2 and reading your letter hit so close to home for me. I also often shy away from this board because I find it a bit overwhelming and I get scared. I know it is not the intention of anyone here, in fact everyone has been so helpful, it's just my own issue in learning to deal with this. That being said, I think I would TOTALLY sign my little guy up for this in a heartbeat! Obviously your concerns are legitimate and they would keep me up at night as well. But, on the flip side, I feel like the risk of accidental exposure is greater than the controlled exposure you will be faced with. And, you have the benefit of not being the first one to participate in this (thank you to those who have come before us) so you do have some positive history to base this decision off of. My only question is do the doctors recommend doing this at a younger age versus an older age? Have they seen any benefit besides reducing their risk to accidental expoure if they are treated at a younger age? I'd be curious to know if they ahve had the same success with "older" participants.

I'm anxious to hear what you decide. Please keep us posted and we will keep you and your family close in prayer. Thank you for your courage.

Sherri

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By ajinnj on Wed, 02-16-05, 04:14

Two more questions for you: has your son had any previous reactions to peanuts and if so what were his symtpoms. Also, does he have any other food allergies besides peanut?

Allison

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By Peg541 on Wed, 02-16-05, 05:51

I asked my son how he felt about this. Maybe I wish I had not asked because we both got sad.

His reply was:

[b]"I don't know, mom. Not something that can just be asked. I need to sit under a tree somewhere and contemplate for like a year. Give me time"[/b]

He later told me he would be too scared to take the first bite. He very well remembers how his reactions felt because he had his first at age 14. His cap rast number is 20.7 if I am reading it correctly.

So maybe for a younger child yes. Someone like my son who is 20 and has grown up with his PA has too many defenses and fears. And also like AnnaMarie said in another thread, my son knows how to handle his PA, it's not fun but he's OK with it.

Maybe the devil you know is better than the devil you don't know.

I wish you luck in your decision.

Peggy

[This message has been edited by Peg541 (edited February 16, 2005).]

__________________

Peggy

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

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By melissa on Wed, 02-16-05, 12:41

Allison,
My son's only exposure to peanut came at 15 mos to a bite of my pb sandwich (long story that I've told before involving his FORMER ped telling me to give him pb b/c he needed the protein)...he had hives, I gave him Benadryl and took him to the doc, hives were gone w/in probably 30 mins. He was not covered in hives, but had some on his face, his belly,and a couple on his legs. He is also allergic to eggs, w/ his only reaction being at about one year to scrambled eggs; again the same kind of hives. His caprast for egg is 4.3, and Dr. Burks fully expects him to outgrow that in a # of years.
Melissa

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By belee on Wed, 02-16-05, 14:31

When I first heard of this type of study for peanut allergy, I thought they must be crazy for wanting to purposely put peanut in an allergic individual. But after more thought I realized this is no different than immunotherapy ("allergy shots") to other substances (e.g. dust, cat, mold, trees, bees, etc.). My son and I have been getting allergy shots for years. And what are they doing? Putting dust, trees, mold, grass, etc. into our system. And our allergies are much less severe because of it.
I also took allergy shots for bees several years ago (because I had an anaphylactic reaction to a bee sting). If at that time "bee shots" were not already available and I was asked to participate in a study where they said they were going to inject bee venom in me, I probably would have said, "No way!"
Luckily for me and others, someone, sometime, DID participate in those studies -- because now I can get stung by a bee and have NO REACTION! That is a huge relief.
So with these type of studies, I think we have to trust the scientists and doctors -- trust they know what they are doing.
That being said, I wasn't clear if all of the testing/ingesting would be done under the care of a doctor?? Your son would be held for observation for 2 hours after ingesting peanut? You mentioned something about reactions at home, so I wasn't clear on that.

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By mistey on Wed, 02-16-05, 21:20

I sat and thought a while about this. I think that for me, because I can be overly anxious at times when it comes to my ds, I couldn't let him be enrolled in a study. But let me just say that I have the most respect possible for those who are willing to be the pioneers to possibly help find a cure someday. I wish you the very best of luck.

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By jtolpin on Wed, 02-16-05, 21:29

well well... a clinical study!

Caitlin was in a pre-fda approval clinical study for Elidel. Worked well, FDA approved, and we still use (sparingly, now that eczema is under control) until the recent studies are brought out, and maybe its a different story...

We too, were asked, if we wanted in on this study. We turned it down - for both DW Caitlin.

For Ann, she's been peanut free for 30+ yrs. She avoids certain foods, and lives a 'normal' life.

For Caitlin, if she COULD have peanuts, how would that impact her life? Not at all.

She'd still be allergic to other foods.

It IS an interesting study, Melissa. Truly it is. I'm sorry you didn't want to post about it.

No one (AFAIK) would slam you for doing it. Would most of us put our child through it? Who knows...

Weigh the pros/cons (the whole see-saw approach). Make your decision.

If Ann had the choice 25 yrs ago, maybe things would be different today.

Who knows though...

But should you do the study, you in good hands (AFAIK) with the good doc.

I hope it goes well for ya!

Jason

------------------
[b]* ENRICHED * [/b]

__________________

[b]* Beyond Obsessed * [/b]

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By AJSMAMA on Wed, 02-16-05, 23:20

What a tough decision you have. I thought about this for awhile and I just don't think I personally could enroll my son in it.

I wish you the best though and please let us know how it turns out.

Jaime

__________________

Jaime

A.J. 7 PN, TN
Asa 2 egg, milk

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By melissa on Fri, 02-18-05, 13:12

Thanks to everyone for your input...I appreciate all of it, the pros and the cons. We have not made a decision yet. For someone who has a hard time deciding what to make for dinner or how to cut my hair, this is excrutiating for me. DH and I sat down and made a list of about 20 questions for Dr. Burks and will be talking to him today. I will let you know if I find out anything interesting and will keep you posted on our decision. At this point I feel like he can handle the IV and the blood tests, and I can handle to 6 hour round trips, but my biggest fears are a major reaction, and what if it doesn't work and this exposure completely wipes out all chance of outgrowing (even though Dr. B says his chances are very remote). Anyway, that's where my thought processes are going right now. Will keep you posted.
Melissa

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By mommyofmatt on Fri, 02-18-05, 20:24

Wow, Melissa I don't know what I'd do. It would be very tempting, the thought of possibly being able to cure the allergy or limit the seriousness of a reaction.

I guess probably my biggest fear would be him having a serious reaction in the study. If the doctor thinks he doesn't have a shot of outgrowing it, then I'd probably be more likely to try and do something proactive to help him.

My other big fear, possibly bigger, would be if sensitizing him has the potential to make him MORE sensitive to peanuts, like having airborn reactions or more severe reactions than he's had.

If you can get answers you're comfortable with to those big fears, than I'd probably vote to do it. If you can't get comfortable, I'd hold off. Is there a window of opportunity here? Could you go back to him in 2 years lets say and do it then? Maybe by then they'd have more data to address your biggest concerns?

My ds is almost 3, so you might like to hear our experience last week. We just went to his yearly allergist appointment and he got the skin test and CAP RAST done. I explained to him what would happen with the blood test in really simple terms.

I was AMAZED at how well he did. When we went to the back room to draw the blood, he started lifting up his sleeve for them to insert the needle [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]. He was very still and started to cry when it hurt, but SOO good. It was a very different experience than past appointments.

I guess that would be my other question. How well does your ds do at the doctor's? If the answer is awful (like mine was), maybe wait a little until he seems to do better so it's somewhat less traumatic for all of you.

Good luck in your decision, keep us posted. And, I hope you post when you need help [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------
***[b] ALLERGY ELIMINATOR*** [/b]

Meg, mom to:
Matt 2 yrs. PA,MA,EA
Sean 2 yrs. NKA

__________________

***[b] ALLERGY ELIMINATOR*** [/b]

Meg, mom to
Matt 3 yrs. PA,MA,EA
Sean 3 yrs. NKA

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By melissa on Wed, 03-02-05, 20:24

Just updating w/ more info. We still have not made our decision, but will very soon. We've had phone consults w/ Dr. Burks, his assistant (multiple times), and 2 parents whose children are participating. All agree that the first 2 days (w/ IV) are the worst. After that, no problems. No children have had anything worse than a hive or 2 or a little vomiting on the first day, then no real reactions after that except an occasional hive or tummy ache. According to Dr. Burks, what they are looking at is a change in the cellular level...for ex. producing less IgE not more in the presence of peanut. So far, with the peanut and the egg studies (the egg being done at Duke and Arkansas and on children w/ very high RAST scores) no one's IgE has gone up, every one's has gone down. W/ the egg study, it has been going on for longer than the peanut and the #'s are going down significantly. My major concern (after feeling comfortable w/ the safety issues) was that this would make him worse; increase his allergy, make him more sensitive. Dr. Burks said that no IgE has increased and no increase in sensitivity has been seen. As a matter of fact, a couple of the children in the peanut study have had accidental exposures since beginning the study and had no reaction. One family actually mistakenly "double dosed" their daughter (dad gave the 300 mg and then mom thought he hadn't and gave another 300 mg, the equivalent of 2 peanuts) and no reaction. Dr. Burks said the hope of this study is that:
1. to provide daily safety against accidental exposures...he feels that that is being shown
2. Cure the peanut allergy...he said it will be a year or 2 before they have enough participants to say that what is happening in the IgE levels is "statistically significant"
The reasons he thinks this will work are:
1. When they tried allergy shots for PA 10 years ago, they did work (however w/ very bad side effects, but they worked for those who completed the study); therefore, PA CAN be eliminated, it just has to be a safer way
2. This is the way they currently eliminate allergies to antibiotics and aspirin...by giving increasing doses of the medicine one is allergic to until they can tolerate it
3. Combining the 2 above his hopes is that through the gut will be much safer (and has proven thus far to be safe) and effective

The amount we would start w/ is .1mg of peanut...in a liquid form b/c it is so small (less than a drop).

This is in effect attempting to change the immune response at the cellular level by putting increasing amounts of what you're allergic to into your body so that your body will build up a "tolerance" and no longer recognize it as an "enemy". At the end of 2 years, if the RAST has gone down enough, and if the amount of cellular response to peanut is reduced enough, a food challenge would be performed (at Duke).

I mentioned that it almost sounded too easy so why hasn't it been tried before? It was not until the last year or so when Dr. Burks and some other doctors were able to isolated the allergy-causing proteins in peanuts that this was made possible (I hope I'm relaying that correctly). Dr. Burks readily says that 50% of allergists think this won't work adn 50% are very excited.

Sorry for the long post again, but I want to keep you all informed about this, just like I would want someone else to bring this info.
Will let you know when we've made our decision.

Any more questions, thoughts, please post.
Melissa

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By Suzy Q on Wed, 03-02-05, 22:40

Thank you for posting this information for us. Good luck with your decision regarding the study. I am so hopeful that someday no one will have to deal with this awful allergy.

Thank you to all of those who participate in research studies. It is a wonderful thing that you do.

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By Danielle on Wed, 03-02-05, 23:19

Thx for posting not only the info on the testing but your feelings as well. Some of my friends won't go on these boards because they see how people have been treated. Just remember most of us here support each other and are helpful so don't ever feel as though you are on your own. I don't know what I would do if I were you but I do know that all the "newer" research (food allergy initiative) including what you have mentioned looks very promising. You do seem as though you will be in good hands. Your son is very lucky to have you as a mommy. I know how hard even the daily decisions are that we have to make for our kids and now you must make a huge decision. I look forward to hearing your decision.... in the meantime, I will keep you in my thoughts.

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By Sam's Mom on Wed, 03-09-05, 23:09

Melissa,

Thank you for all the information and for posting your honest feelings. I feel like I could have written part of your posts. My DS is 19 months old and also just allergic to peanuts and eggs...sounds very similar to Justin! We found out about the peanut allergy at 14m when he had a bite of PB. Like Justin, Sam also just had about 10 hives and a red splotchy rash around his face. The allergist considered it a relatively moderate reaction. Ironically, Sam started eating eggs (scrambled) after his first birthday. He had them probably 5-10 times without suffering any reaction (I was nursing him still so I wonder if that had anything to do with it?). After I weaned him and exactly one week after the peanut reaction (this was during the time b/w his reaction and his first appt. with the allergist), he got a splotchy rash (no hives)on his face after eating eggs.

Sam has never had a CAP RAST (is scheduled for one after he turns two), but has had the skin prick test. I don't remember the exact dimensions but the egg was pretty moderate (2, I think?) and the peanut was more severe (4). The allergist also seems confident that he will outgrow the egg allergy within the next few years. I am anxious to see what his CAP RAST shows. BTW, we live in Fort Collins, Colorado and see Dr. John James (also a prominent allergist...on the board of FAAN).

If I were you, I would be very tempted to participate in the study. Please let us know what you decide. I will be anxiously following your story, as ours seem so similar. I also don't post much here (and try not to lurk much unless I have a specific concern). I wouldn't say that I have a relaxed comfort zone (because I definitely feel pretty strict about this), but I also want Sam to lead as normal as a life as possible. He participates in playgroups, art, tumbling, and music classes (in which snacks are served), has been on 8 airline flights (going on another tomorrow), has been to Disney World twice (once since his diagnosis), the zoo, movies (all kinds of places with peanuts around), and has never had any sort of reaction. Knock on wood! I take every precaution possible but I refuse to let this allergy limit him.

Good luck!

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By melissa on Mon, 03-28-05, 13:41

This is the study I was talking about...wish us luck...we start on Wednesday.
Melissa

Physician awarded allergy study grant

Duke Food Allergy Initiative

BY JIM SHAMP : The Herald-Sun
[email]jshamp@heraldsun.com[/email]
Mar 27, 2005 : 7:41 pm ET

DURHAM -- A research physician with the Duke University Medical Center is on a quest to keep other children from suffering extreme reactions to peanuts like the one that killed a Cabarrus County teen in January.

Arvil Wesley Burks, Duke's chief of pediatric allergy and immunology, is seeking children newly diagnosed with a peanut allergy to participate in his two-year examination of carefully increased oral doses of peanut proteins. He was recently awarded a $165,000 grant for to study the therapy's safety and effectiveness.

Gina Marie Hunt, 14, died Jan. 22 at NorthEast Medical Center in Concord after eating something tainted with peanut protein while shopping at a local mall. Hunt, her family, friends and her school associates were aware of her peanut allergy, officials said, but apparently Hunt didn't know peanuts or peanut proteins were in the food she was eating. Her body's immune system produced an allergic reaction, leading to her death.

Food allergy occurs when the immune system mistakenly believes that a harmless substance, such as a peanut, is harmful. In its attempt to protect the body, it creates antibodies specific to that food. The next time the individual eats that food, the immune system releases massive amounts of chemicals and histamines in its effort to protect the body. These chemicals trigger a cascade of allergic symptoms that can affect the respiratory system, gastrointestinal tract, skin and cardiovascular system.

In the process, called anaphylactic shock, breathing can become increasingly labored, the heart may beat erratically, victims may have vomiting and diarrhea and skin can break out in a rash.

Eight foods account for 90 percent of the food reactions in the United States: milk, eggs, peanuts, tree nuts (walnuts, almonds, pistachios, etc.), wheat, soy, fish, and shellfish (lobster, shrimp, etc.). Food-allergic reactions produce more than 30,000 emergency room visits a year in the United States and kill an estimated 150 to 200.

According to Burks, about 80 percent of the allergic reactions from foods, and the most severe ones, come from peanuts and tree nuts. Shellfish and fish represent progressively lower threats, with other foods falling well down the chart in terms of life-threatening upsets.

Burks' grant, from the non-profit Food Allergy & Anaphylaxis Network, is among the first five scientific research studies funded by the network's newly established FAAN Research Grants Program. Burks is a member of the 12-person FAAN medical advisory board, which provides medical oversight of the Fairfax, Virginia-based organization.

The organization advocates for the 11 million Americans with food allergies.

"In the past 10 years, scientists have learned significantly more about food allergies," said Anne Mu

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By mommyofmatt on Mon, 03-28-05, 20:37

GOOD LUCK Melissa!!!!! I hope all goes well for your ds [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Thanks for keeping us updated, and for taking steps towards helping to find a cure!! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Please keep us posted, I'll be thinking of you.

Meg

__________________

***[b] ALLERGY ELIMINATOR*** [/b]

Meg, mom to
Matt 3 yrs. PA,MA,EA
Sean 3 yrs. NKA

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By NCMom on Tue, 03-29-05, 03:08

This sounds scary but wouldn't it be awesome if it worked! I'm not sure if we would do it but it sounds very controlled and the doctor well qualified. Where are you located, Melissa? I'm also about 3 hours from Duke. Please let us know how it goes - we'll be pulling for you and your son and praying for you!

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By momma2boys on Thu, 04-07-05, 21:43

Melissa, how is it going?

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By melissa on Tue, 04-12-05, 20:05

So sorry I haven't update this...it's just been a stressful couple of weeks and I've "neglected" this thread. Justin did well w/ the IV (cried for a couple minutes) and they started out at a minute amount of peanut (about .01 mg I think) then went up every 1/2 hour. He was checked every 15 mins (skin, heart, lungs, pulse, bp, temp). He was really sick of all the checking. When we were 2 doses away from our max that day, at the 12 mg dose (which was a cumulative of about 25 mg in his body adding the others that he had had) he started reacting...tired, a few hives, and sounded hoarse. They started to put Benadryl in his IV and found his IV to be clogged. At this point I was very scared. He would not take Benadryl by mouth (upset, tired of being "messed with") so to be on the safe side they gave him a shot of epi. It is amazing how fast it works. He was back to himself soon (but still had hives, which finally went away after we were able to get Benadryl in him). Our study day was over at that point, as they of course decided they couldn't safely give him more doses at that point. We stayed at Duke for about 4 more hours, just being observed. We went back to the hotel were DS began jumping on the beds again (so back to himself). We went back the next AM and had to have another IV (since the 1st one failed) and even though the dr felt he could probably tolerate the 12 mg dose w/ no other amounts in his system, he decided to err on the side of caution and back him up to a 6 mg dose...no reactions. We stayed for 2 hours and came home to give him 6 mg each AM. He's been fine w/ it. We go back Thursday for the 12 mg dose. Since we had to back way up, I'll now be driving 3 hours to and 3 hours home from Duke every 2 wks through September. But after seeing how bad the reaction can get that quickly we're more resolved than ever to be a part of this. I will not lie and say I wasn't scared...DS seems to have no "issues" w/ our day but I was traumatized. DH saw that his reactions would not always be hives only, and his level of taking this seriously has shot way up. And we both saw how quickly the epi works...I would never hesitate to give it. I still believe that Dr. Burks is on the right track...all of the children in the study had a reaction on the first day and went home on anywhere from 6 mg to 50 mg. The majority of the children are now tolerating the maintenance daily dose of 300 mg w/ no reactions, and a couple are close to that dose. In my "nondoctor" mind, it stands to reason that something is working. There will be some data I believe published this month re: the first children in our study.
I appreciate the interest in this and, even for those who may not have chosen to do this, I hope you'll continue to keep DS in your thoughts and prayers...if this works, what a difference it will make in all of our lives.
I'll update after our next round on Thursday (asap).
Melissa

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By synthia on Wed, 04-13-05, 02:02

Melissa,

I want to thank you and ds for what you are doing.It gives me hope for a cure.I can only imagine what must have went thur you heart and soul watching this happen to your child.
I would like to send you a angel to watch over your son and family while you go thur this research study.

Stay strong

------------------
Love this site
Synthia

__________________

Love this site
Synthia

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By melissa on Wed, 04-13-05, 11:52

Oh Synthia,
You brought tears to my eyes (it happens a lot these days). I'll take that angel. I can't believe sometimes that we're doing this b/c I'm the worlds biggest chicken and am not usually very trusting of doctors. But I do have the utmost faith in Dr. Burks...he has a very calming presence and when you're around him you just really believe that he is being honest w/ you and that he really knows what he's doing.
I know I'll feel much better after we go tomorrow if he handles the 12 mg dose well.
Thanks again for the support. It means the world.
Melissa

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By mommyofmatt on Wed, 04-13-05, 12:50

Melissa,

I don't know if I can top Synthia's post, she said it perfectly [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Sending you and your ds lots of {{{{hugs}}}} and good wishes as you go through this!! From all you've said, it does sound promising, although scary to go through. Makes me wish I lived closer to Duke, very tempting to think my ds could build up some tolerance to peanuts.

I'll send you an exta {{{hug}}} for that first day when he needed the epi. I love the image of him jumping on the bed later though [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

You're doing a wonderful thing for your child, however it turns out. At the very worst, you'll know you tried to make his allergy better, and that alone is good.

But it sounds like he's on his way to building some kind of tolerance. Wonderful news!!

Sometimes the best things in life are the hardest to do right? I wish you and your family all the best and thank you for being brave enough to do this. Someday studies like this might help all our kids [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

__________________

***[b] ALLERGY ELIMINATOR*** [/b]

Meg, mom to
Matt 3 yrs. PA,MA,EA
Sean 3 yrs. NKA

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By Danielle on Wed, 04-13-05, 23:57

Bless you. Really. You are courageous and so is your son. As I sit here and look over at my 2 little girls, I think how life will somtime become easier because of people such as yourself. I will look forward to your posts and keep you in our thoughts.

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By momma2boys on Thu, 04-14-05, 01:52

Melissa, I really can't tell you enough how much I appreciate what you and your family are going through. I feel like it is for "us"!

Thanks for keeping us updated, I will be keeping tabs to see how you are doing. Best of luck to you and give your guy big hugs and kisses and tell him we said thank you!!

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By melissa on Thu, 04-14-05, 23:35

Just a quick update. We went to Duke today and went from 6 mg to 12 mg w/ no reactions. I was so excited b/c I had been nervous about today. DS played the entire 2 hours there w/ the nurses and didn't want to leave to come home. So, we do 12 mg each AM at home for 2 weeks then return to Duke on the 28th for 25 mg. They hope to have some numbers on the kids who have been in the study for a year very soon...when I know anything I'll let you all know.
Thanks again for the support.
Melissa

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By melissa on Mon, 04-25-05, 11:48

Here's a news bit that came out from Duke University about the study we're in (I don't know how to link or I would have done that for you):

"This week on MedMinute....For individuals with an allergy to peanuts, accidental ingestion can produce a severe reaction. A new study is looking a whether giving tiny doses of peanut protein can build immunity and even eliminate the risk. If successful, researchers may try this approach with other foods that produce allergic reactions.

Listen to MedMinute Audio

Durham, N.C. -- For more than a million people in the U.S., taking a bite of food containing peanuts can be a life-threatening experience. The allergic reaction can cause severe respiratory problems and even death. One study is looking at a novel treatment for peanut allergy in children. Wesley Burks, chief of the Division of Pediatric Allergy and Immunology at DukeUniversityMedicalCenter, says the approach is much the same as using antivenom to gradually build up immunity to bee stings.

"What we're doing is to take small amounts of peanut protein and gradually give increasing amounts over an initial day and then over a period of three-and-a-half to four months. Every other week, we give them a larger dose. At the end of that period, they're getting about 300 milligrams of peanut protein, which is the equivalent of one peanut."

Burks says early results are encouraging and believes the same approach may work with other food allergies.

"If we can find a safe and effective way to do it, there's nothing specific about the peanut that we couldn't do it with other foods like milk, eggs and tree nuts."

I'm Cabell Smith for MedMinute."

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By Suzy Q on Mon, 04-25-05, 14:35

Thank you very much for the update. I wish you continued success in the program. This is very exciting. Please post updates in the future.

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By julieneaman on Mon, 04-25-05, 17:47

Melissa,

Thank you so much for what you are doing. My ds just turned 3 on Friday and if he had been eligible, I definitely would go for it. Hang in there and keep us posted.

Julie

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By Jimmy's mom on Tue, 04-26-05, 01:20

Melissa, thank you, thank you, thank you! I know you are doing this with your son's best interests in mind, but it really does help all who are PA, no matter what the results of the study (even if it isn't a complete success, it helps the doctors learn more about what could work next time). I wish you the best of luck.

__________________

[url="http//www.the3day.org/boston07/deedaigle"]http//www.the3day.org/boston07/deedaigle[/url]

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By ktmom on Fri, 04-29-05, 05:04

Melissa,

God bless you .. you and your DS are in my prayers.
Thank you for sharing all the information.

Do you know what is the age group of the children in the study ?

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By melissa on Fri, 04-29-05, 11:50

I believe the ages are 1-8; they are also doing a Xolair study for those above age 8.
Melissa

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By melissa on Fri, 04-29-05, 16:50

Just an update and first, a thanks to everyone who is wishing us well and praying for us. We went back to Duke yesterday and went from 12 mg to 25 mg (peanut). DS had a small hive on his eyelid (but was already somewhat hivey from something already, but unrelated to the peanut) and nothing else. Today, I gave him his 25 mg dose and he had no effects. I'm not a doctor and don't pretend to know how this all works, but it gives me great hope that this is working, it is changing the way his body responds to peanut. At his first day at Duke, he had the major reaction w/ about 22.5 mg in his system total. Now he's tolerating 25 mg w/ (knock on wood) no symptoms.
I'll update after our next increase, which should be in 2 wks at 50 mg.
Melissa

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By on Fri, 04-29-05, 20:35

Melissa, I check this thread often to see how you are doing. Sounds like it's working. Thank you for updating (and for bravely going where many of us can't!). I'm considering the Xolair trials for my DS (age 11) it would be about 2 hours away. If I was sure he would not get the placebo, I would do probably do it. Another thing is the once you start you can't stop aspect of this med. Well anyway, thanks again for posting and my thoughts and prayers are with you and your DS.

Bridget

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By melissa on Fri, 05-27-05, 18:28

Just a quick update. DS is now on 75 mg of peanut flour a day and doing well. It still seems like such a long way to go to get to 300 mg though! The doctor hopes to have some numbers and other information in the next couple of weeks and I'll pass that along as soon as I know. DS has had no problems w/ this, and the mystery hives he had on and off for a couple of weeks have been deemed more than likely caused by a virus (they did not correlate at all w/ his pn doses, etc).
Melissa

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By belee on Fri, 05-27-05, 20:17

Melissa,
Thanks for keeping us updated. I've been wondering lately how things have been going. I'm glad to hear things are going well. Thanks again for keeping us informed.

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By melissa on Fri, 06-10-05, 19:14

Quick update...
We are now on 100 mg and fine. Will do blood testing first week of July.

By the way, if anyone is interested, and w/in a few hours of Duke, they are taking more children in this study (age 1-6) and may be starting another study soon for ages 6-11 using a sublingual (under the tongue) drops instead of peanut flour. If you're interested, let me know and I'll get you the contact info.
Melissa

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By Danielle on Mon, 06-13-05, 21:17

I am actually considering this. There is a research study going on in Tampa which is 45 minutes from us.
I wasn't considering it before our last RAST came back last week. I am so SAD because with no exposure she has gone from RAST 2 to RAST 3. I am sooo strict with our foods and we almost homemake everything. The school is nut free and I supply the snack for our pre-k. We have no may contains and I call every company. My makeup is safe, all soaps are safe, dog food... She doesn't touch door knobs, go to restaurants, fly on planes, blah blah blah... So now I am considering this study in Tampa. Thank you so much for updating everyone. I would never even consider a study if it weren't for people such as yourself giving updates and hope.

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By melissa on Thu, 06-23-05, 21:31

Back from Duke and now on 125 mg...so far so good!
Melissa

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By mommyofmatt on Thu, 06-23-05, 23:49

Awesome!!! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
You must feel great about deciding to do the study! Meg

[This message has been edited by mommyofmatt (edited June 23, 2005).]

__________________

***[b] ALLERGY ELIMINATOR*** [/b]

Meg, mom to
Matt 3 yrs. PA,MA,EA
Sean 3 yrs. NKA

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By on Sat, 06-25-05, 16:37

Double Awesome!!

I see you have gone from 100 mg on about June 10 to 125 mg on about June 23. So, are they increasing by 25 mg every 2 weeks?

If so, the 300 mg mark will be here before you know it! Awesome

Did I say, AWESOME!!
Bridget

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By melissa on Sat, 06-25-05, 19:32

Yes, we are now increasing by 25 mg every 2 weeks. We should be at 300 mg by the end of September if all goes well. At that point we only have to go every 3 months, which will be very nice! So this next visit he will be eating 1/2 a peanut every morning.
Melissa

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By Ree on Sun, 06-26-05, 01:06

Quote:Originally posted by melissa:
[b]So this next visit he will be eating 1/2 a peanut every morning.
Melissa[/b]

Wow! That puts it into perspective! I makes me wonder why strict avoidance is recommended...I just don't get it.

You must be sooo thrilled you're doing this. Thank you so much for helping the rest of us! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

__________________

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

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By LuvMyKids on Sun, 06-26-05, 21:36

I just wanted to say that I think it is great that you are doing this. I have considered doing this, but I have some questions.

1) What is the long-term goal of the project (e.g. to eat one peanut or to keep trying to build up where you can eat several peanuts).

2) Will they retest Ige at some point to find out if the peanut Ige has gone up/down or stayed the same?

3) In the long term to keep from losing tolerance, will you have to keep feeding your child a peanut every day?

Thanks in advance for answering these questions. I've been following this thread for a long time. It is so interesting.

__________________

Allergic to Milk, Wheat, Eggs, and Peanuts

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By melissa on Sun, 06-26-05, 22:47

LuvMyKids,
I'll try my best to answer your questions...

1) What is the long-term goal of the project (e.g. to eat one peanut or to keep trying to build up where you can eat several peanuts).
The long term goal is to cure the children of their peanut allergies; this may or may not happen (since it is a study they have no way of knowing if it will happen or not); short of that goal, a "lesser" goal would be to simply protect the child in case of an accidental exposure; this study is slated to go only to 300 mg, the amount in one peanut; once the children get there, what happens next will depend on the results

2) Will they retest Ige at some point to find out if the peanut Ige has gone up/down or stayed the same?
IgE is tested every 3 months or so; they are also doing skin tests about every 6 months. In addition, the blood tests will be done to also watch what the IgE cells do in response to peanut (ex. are more or less created to attack the peanut protein...I hope I'm explaining that right); so of course while they want to see the RAST #s go down, that is only one part; they want to see what happens at a cellular level in response to peanut

3) In the long term to keep from losing tolerance, will you have to keep feeding your child a peanut every day?
They can't answer this question yet; it will depend on what happens w/ each child's levels; we just decided that if it is not a cure and is "only" protection, feeding him ground up peanut every day is a small price to pay to keep him "safe"; the same doctor is also starting a study using drops instead of ground up peanut, which would be a much easier way to do it.
The study is scheduled to take 2 years for each child; some children have been in for over a year; some have had accidental exposures w/ no reaction w/in that time; the only "results" we have so far is that in the ones whose blood and tests have been studied (the ones who have been in the longest) their "numbers" have gone down (we are anxiously awaiting a presentation of all the numbers and results, which may come in the next month or so).
I hope that helps; I understand what they're doing, but I have a hard time explaining it. If you want the number of Dr. Burks' research assistant, please email me at
[email]mjade110@ntelos.net[/email]
Melissa
(feel free to ask me more questions if need and I'll try my best to answer)

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