melissa - do you know what the end result of this study is going to be for you and your son? Once the study is over, will you continue to give your son daily doses of peanut? Will you stop entirely? If you stop, what will happen to the tolerance he has built up? If you continue, will this be a life-long activity? Will you continue to increase the levels on your own?
The reason I ask is because we have started the SLIT treatment for basically the same reasons that you are participating in the study. I want my son to be able to better tolerate accidental exposures. However, I am not really sure what end result we will have with this treatment and only thought about this question after my son's appointment with the doctor.
Just wanted to again let you know that I really appreciate your participation in the study and your willingness to update everyone on your progress. Best of luck.
The "ultimate" goal is that this will make DS no longer allergic to peanuts. The "mini" goal is that it will protect him in case of an accidental exposure...we have met that goal. We will only know if the main goal is met if his RAST goes under 2 and he passes a food challenge. From what I understand, if need be, he could take a dose of peanut daily forever...supplied by Duke, carefully measured. At least that's the thinking right now...could it be simpler w/ a certain amount of peanut butter or a capsule containing ground up peanut some day, who knows? But I'm assuming we're in it for the long haul, that he will have to take a "maintenance" dose of peanut daily forever, but I'm hoping that eventually we meet the "ultimate" goal!
Nope, nothing new...still taking the daily dose of 600 mg (2 peanuts) w/ no problems...we will go back the end of Oct or beg. of Nov and hopefully bump up to 4 peanuts...also blood and skin test then.
I was hoping some new #'s for the other kids in the study would start coming out this month...if so I'll let everyone know how they look.
Thanks for asking!
I too admire you and your son for your bravery. THANK YOU for doing this for all of us!
I was talking to my DD's allergist last week, let's just call him Mr. Pessimistic, and I mentioned the Duke study. He came out and said it is not successful. He "knows" the doctor and talked to him about it (Wesley Burke slipped my mind, so I couldn't confirm who he talked to) and the doctor "running the study" told him it's really not working and kids can barely tolerate 1 peanut.
Of course, this is a guy who, regardless of his profession, does not "get" just what tolerating one peanut would mean for us. But, I wanted to check with you because I thought you had posted earlier about kids who had been in the program longer and were tolerating even more than your son at this point.
My husband says our allergist is diametrically opposed to a vaccine/cure/whatever because then we won't have to keep going back to him. Geez, who's the pessimist here? LOL!
I'm not sure what to say about your doctor...what he is saying is completely opposite from what Dr. Burks tells us and what he is quoted as saying in multiple news stories...maybe you could point your doctor to this thread, or in some way "enlighten" him...it is frustrating to me when doctors act like they "know it all" and actually they probably know less than most of us "parents in the trenches" kwim?
At this point in the study, DS can "tolerate" (in other words, no reaction whatsoever) 2 peanuts daily. When we started, his throat started closing at less than 1/10th of a peanut and he required epi ...sounds successful to me, but again, my definition of success is to keep him alive, maybe the doctor's definition is to cure him (would be great, but i'll take what we can get). At the last big challenge that we had, DS tolerate a cumulative amount of 3 peanuts w/ no symptoms, then somewhere between 3 and 7 cumulative (over an hour or so of incremental dosing) he had a reaction (mild, a couple hives, some coughing and tiredness) which was stopped by Benadryl. Other kids in the study were able to tolerate the top dose of 6 peanuts, which was a cumulative amount over less than 2 hours of 13 peanuts. So I'm very interested in exactly where your doctor got his info and why he's so pessimistic (I tend to agree w/ your DH by the way LOL).
If you want to email me his name and contact info off board, I'll be happy to send him a note re: our progress in the study...if you're comfortable w/ that.
We go back Oct 26 for blood and skin testing and to bump him up to 4 peanuts (yikes!).
Melissa, Thanks to you and your son for participating in this study. Once the kids are desensitized, I'll be waiting in line with the adults!
I also want to thank you and your son for participating in this study, and thank you for sharing all your experiences with all of us! Everything I have read and heard about the study sounds very encouraging. We are too far away to participate- however I am keeping a close eye on everything in case we are lucky enough to relocate closer. Thanks again, and please keep us updated on the progress! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Melissa, I applaud you!! I just found this website today and my eyes are burning from all I've read today! It's almost midnight and I'm still reading! Thank you for keeping everyone informed and giving us all hope! Bless you and your family! Big Hugs sent your way! Are they doing these studies anywhere else? I live in SW FL, I would LOVE to do anything I could to know that my son wouldn't die from accidental exposure. With this study you're in, any talk about how long it would be before something would be on the market? Best wishes for continued success! Thanks for always updating us all! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] P.S. I think back a few pages Danielle mentioned a study she was possibly considering in Tampa. If Danielle is reading, did you ever do it?
Someone in another thread asked for an update...will hopefully have one later this week as we are scheduled to return to Duke Thursday for blood and skin testing and to bump him up from 2 peanuts to 4 (600 mg to 1200 mg)...I SOOOOOO don't want to go, don't want to put him through the tests, and don't want to bump him up to 4 peanuts b/c it makes me so nervous, but I'll just have to pull it together and do it.
HOWEVER, DS has had a hard to get rid of bout of bronchitis, so if he is not 100% clear by Tuesday evening we'll have to reschedule. If we end up going Thursday, I'll try to get the latest #s for others and will update you Friday.
Say a little prayer for no reaction, a good blood test, and low peanut (and egg) numbers...I don't ask for much, right? LOL
Thanks to you, DS and your family for going through this. Eventually, it will help all of us!
Thanks for doing it.
Yes, thanks SO much! I will definitely say a prayer- and hope that everything goes smooth and that you have wonderful news! Please do keep us updated! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Thoughts are with you.
Well, we have been pushed back to next Wed, Nov 1...hopefully I can get him well and keep him well until then.
Also, Newsweek is doing a story on Dr. B and the research studies...hopefully in next week's mag, will let you know for sure.
Thanks for the update, hope your son is feeling better. Let us know about the newsweek article! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Good News! Just back from Duke and will update more tonight or tomorrow when I have time but DS went from 2 peanuts to 4 peanuts w/ NO REACTION! His skin test looked much smaller too, will have blood results next week...I think we are really on the right track!
This is such good news. I can't tell you how much I live for your posts. I'm so glad he is doing so well.
Thank you for what your family is doing for all of us. Fingers crossed for great blood results next week.
That's Terrific news! SO glad it went well!
That's great! I've been thinking of you all day and wondering how it went. Thanks for posting something so quickly. Let's talk soon.
Thanks so much for keeping us updated--this is good news indeed. And it is good to hear that your son is doing well in the study--you are both very brave for participating!
That's great news!! Can't wait till you get the results back. Thank you, thank you, thank you for doing this and keeping us updated.
THAT IS AWESOME!!!! I hope you realize how much hope you give to the rest of us. I know this has been such a long, stressful journey your family has been on. And really, there aren't enough words to express how much I, and many others here, are grateful to your family for it. I've always heard the 20% number, and it isn't all that encouraging. Your posts give us so much hope. Thank you.
remember from the posts above that when we started the study in March 2005, DS required an epi for less than 1/12th of a peanut. This past June, they tried to take him all the way up to 1800 mg (6 peanuts)...he had a mild reaction at the 1200 mg dose (4 peanuts) and required benadryl (but keep in mind at that point he had a cumulative amount of 7 peanuts in his system in less than an hour).
So, fast forward to yesterday. He had been on the 600 mg (2 peanuts) dose for 4 months. We did 1200 mg (4 peanuts) and he had zero reactions...not even any of the red "splotches" he's famous for. It is a lot of peanut to try to get down him though, and no amount of applesauce can disguise the taste and smell.
They did the blood test (an ordeal) and included a RAST for egg too...should have those #s next week. Last time his pn rast was taken it was 15 (down from 25)...
His skin test looked great...to remind you...they do a titrated skin test...full strength pn, then slightly lesser strength, then 3 more lesser strengths. After his time is up they put scotch tape on the wheals/flares and draw them, then put the tape in his notebook to compare. The 2 weakest places had no wheals/flares at all, and the highest strength places were much smaller than in March. So, I'm hopeful for a good RAST #.
A couple of the kids in the study had #s close to 2 but not quite there yet (as of this summer)...more numbers will be coming out next week.
I have to say that honestly, for the first time, I am beginning to see the light at the end of the tunnel...I know Dr. Burks is on the right track. It is hard for me to believe that DS eats 4 peanuts a day now and doesn't react. I am slowly starting to realize that I can send him out into the world and he's not going to die from peanut allergy...I still can't change the way we handle food, not until he's no longer allergic. But I'm starting to actually feel the difference, and it's nice. Now I'm excited...where I've been apprehensive throughout this whole thing, I'm excited and ready to see where this takes us.
I will update as soon as I have numbers.
By the way, this study is now closed (I think) and they are enrolling for the same type of study but some will get a placebo. They are also still enrolling the SLIT (sublingual drops) study for ages 6+ and trying to fill a baby study (under age 1 w/ egg or milk allergy and eczema...tracking to see who develops pa and why)...if anyone is interested I'll get you the contact numbers.
THANKS FOR ALL THE THOUGHTS AND PRAYERS!!!!!
Thanks SOOO much for the update. Two quick questions:
Did you hear anymore on when the Newsweek article is supposed to come out?
Also have they given you any timeframe when they think what you are doing in the study might be available as a treatment (I realize this might be 5 or so years), just curious if they have given any estimate, or will they have to complete the slit and placebo/non-placebo studies first?
THANKS AGAIN! I am so happy everything has gone so well for you- you give us all hope!
I needed to read this again today. This is very encouraging. Thank you for keeping us updated. I really appreciate your posts.
I AM SO HAPPY FOR YOU AND FOR YOUR SON!!!
Thank you so much for keeping us updated. Your courage has helped us all.
Still no numbers yet...they haven't run them...patience patience (practicing my new mantra)
To answer questions:
Newsweek article could be any week...I think it got bumped, so I'll just keep checking and let everyone know
Timeframe...I can't really answer this...I know I've asked before and I think the answer was "several years"...I know the placebo study has to be completed, and more patients may be needed to publish results...sorry I can't answer that better; will see what i can find out next time
(edited name out by office)
At this point DS is desensitized but not cured...I guess if his numbers never go below 2 and he never passes a double blind food challenge, he will always have to take a daily maintenance dose of peanut to keep him desensitized. But, if that's all we have to do to keep him safe, I'll be fine w/ that.
Hope this helps,
Thanks so much Melissa! I will keep my eyes out for the newsweek article as well! I really appreciate you keeping us up to date.
Just checking in to see if you have the RAST results back yet. I'm crossing my fingers that the numbers are low or better yet negative for peanut and EGG!
No numbers yet...grrrrr...I'm trying to be patient...I talked to them last Wednesday and the person who runs the numbers for the study had been out of town...I expected a phone call Friday, but nothing, and then still nothing today.
But hey, good things come to those who wait right?
Still no sign of the Newsweek article either, as far as I know.
Melissa -- has anything been published from the study yet? Dr. Mary Morris (at the La Crosse Clinic), who is my daughter's doctor, indicated that something would be published sometime October/November of this year, after which they might get more aggressive with my daughter's SLIT. I've been waiting to hear from her and will call, but just wondered if you had heard anything. BTW - have you met her? I know she's affiliated with Dr. B. and this whole study, but not sure whether she has any contact with participants. Just curious.
Thanks. Also, I should've said this to begin with. It's so great to hear your news! Be proud of yourself that you had the courage to open your mind to this -- I certainly know how often you must have second guessed yourself. Nothing must feel better than knowing you have enabled your son to live without the awful fear you've experienced until this therapy slowly starting proving itself. Let's hope it continues to do so.
We won't get RAST results until April, but as of this month it's a solid year since my daughter's last results, so I'm very anxious to see if the decrease in her scores continues. I'll post as soon as I know.
Such great news to hear. Keep up the good work and thank you a thousand times for posting and giving us all hope.
Have you ever heard if this might someday be tried with a wheat allergy. My 5 year old is pa but my almost 4 year old is wheat allergic although she has never consumed it.
Well, now I'm really hoping good things come to those who wait...we'll be waiting a while on the #s...I don't really understand this but something is wrong w/ the hard drive of the computer that is on/in/something to do w/ the machine that runs the RAST tests (I really really don't understand this at all as you can see) and it (the computer part) had to be sent to Michigan to be fixed, so no #s will be run until it comes back. Oh well, we'll keep waiting (they're doing the egg #'s too, plus the #s for everyone who started the first phase of the study, so lots of people are waiting)...will update when I know, but it could be another month.
Vlcarnes...I haven't heard them mention Dr. Morris at Duke but then things are so busy when we're there...thanks for the kind words...the second guessing has driven me mad at times, but I'm getting better about it.
Danielle...they haven't expressly mentioned wheat, but I know they're doing pn and egg, and Johns Hopkins is doing milk, and the thought has always been if they can do it w/ one food it should work w/ others...so, I would say that's a definite maybe (how do you like that for a definitive answer lol).
ANOTHER MONTH?!?! Jeez. I'm with ya' though- I hope in your case good things do come for those who wait!
Oh poor you!!! It is so hard to wait for numbers. It nearly drives me crazy waiting for DDs RASTS, and that is only a week.
Have you asked how reliable the numbers will be if the blood is just sitting around in a vial? I had a thyroid test come back bad and my doctor noticed that they didn't test my blood draw right away, so we re-did the test and it was normal.
Fingers crossed that when you do finally get results, it is what you are hoping for.
Here is an article on Dr. Burks' studies from CBS News:
WebMD) Children with food allergies are told to avoid problem foods at all costs, but a novel experimental treatment is taking the opposite approach.
In a two-year pilot study conducted by researchers at Duke University and the University of Arkansas, eggs were very gradually introduced into the diets of kids who were highly allergic to them in an effort to desensitize the children. A similar study is under way involving children with peanut allergies, which more often trigger potentially life-threatening allergic reactions.
Early findings suggest that this gradual challenge approach increases tolerance to problem foods, senior researcher A. Wesley Burks, M.D., tells WebMD. Burks is a professor of pediatrics at Duke University Medical Center.
Researchers hope desensitization will help protect food allergy suffers from serious reactions brought on by accidental ingestion of problem foods.
It may even cure people of their food allergies, although it is too soon to tell, Burks adds.
In the peanut study (currently unpublished), children were initially given the equivalent of 1/3,000 of a peanut. Most were eating a peanut a day within six months with little reaction.
"Some children who had allergic reactions to literally a thousandth of a peanut at the beginning of the study had no reaction later on when challenged with 15 peanuts," says Burks.
While very promising, the desensitization approach to treating food allergies is also highly experimental and should never be attempted without close medical supervision.
Children in the egg and peanut trials were watched closely, and many did experience mild allergic reactions to the food challenges early on, Burks says. "This is definitely not something that would be safe to try at home without medical supervision," he warns.
A detailed analysis of the experiences of seven children participating in the egg trial was published online last week in the Journal of Allergy and Clinical Immunology. Those children ranged in age from 1 to 7, and all had a history of allergic reactions to eggs or egg products
This gives me such hope.
Children at Duke fight food allergies
Controlled exposure might make peanuts, milk and eggs less dangerous
Caroline Vande Berg, 6, takes a dose of peanut protein mixed with applesauce from pediatric nurse Pamela Steele at the Duke Clinical Research Unit, where researchers are trying to desensitize children to foods that trigger their allergies.
Staff Photo by Ted Richardson
In severely allergic children, a trace of peanut or smidgen of egg can trigger a deadly reaction. But new research by Duke physicians suggests a way out: feeding children gradually increasing amounts of the foods that sicken them.
When 6-year-old Caroline Vande Berg of Cary started in a Duke peanut allergy study last spring, she was so sensitive she couldn't enter the same room as an open jar of peanut butter without coughing and breaking out in a rash. Today, after receiving daily doses of peanut flour through the Duke study, Caroline can safely inhale or touch peanuts and she can even eat the equivalent of about one peanut a day with no reaction.
The experimental therapy, while still in its early stages, represents a potentially major advance in the treatment of food allergies, which annually send about 30,000 Americans to the emergency room. About 200 people die from allergic reactions to food.
The treatment would be the first to prevent or reduce food allergies, with the power to cut threats from accidental exposures or even cure allergies altogether. Between 6 percent and 8 percent of children are thought to suffer from food allergies, according to the National Institute of Allergy and Infectious Disease.
In many schools today, parents must agree not to send peanut butter sandwiches or any other peanut products to school. And parents of an allergic child must worry that if their child accidentally encounters the wrong thing, someone will treat him before he quits breathing.
Caroline's mother, Janet Vande Berg, used to worry daily that an accidental nibble might cause her child to have a severe allergic reaction called anaphylactic shock. It causes breathing problems, a sudden drop in blood pressure, loss of consciousness and shock -- all of which can kill. Teachers and caregivers all have to be trained to use an Epi-Pen, a ready-to-use dose of epinephrine that quickly reverses a violent allergic reaction.
"Now, she can be a normal kid," said Vande Berg.
The peanut study is one of a series of tests on food allergy desensitization that physicians at Duke and at the University of Arkansas are conducting. Researchers are also working with children as young as 1 who are allergic to milk and eggs, which, along with peanuts, are among the most common allergies.
A small initial study of children with egg allergies found that feeding kids increasing amounts of powdered egg over two years effectively neutralized allergies, said Dr. A. Wesley Burks, chief of Duke's Division of Allergy and Immunology and a senior member of the research team.
Parents brought their children to Duke every two weeks to receive increasing doses of powdered egg mixed in applesauce or yogurt. Children started out eating the equivalent of about 1/1000th of an egg and, over time, worked up to about one-sixth of an egg a day. Between visits to Duke, parents mixed egg into the child's food at home.
At the end of the study, which was funded by the universities and the National Institutes of Health, all seven participants were able to eat two scrambled eggs without reaction. Study results will be published in the January edition of the Journal of Allergy and Clinical Immunology.
"If they can tolerate two scrambled eggs, they're basically not allergic anymore," Burks said.
Burks cautioned that parents should not attempt to desensitize allergic children on their own. Some children experienced mild to moderate allergic reactions, such as rashes or digestive problems, during the study. At Duke, children visit the hospital each time they receive an increased dose of an allergen and are closely monitored. To be extra safe, initial studies excluded the most seriously allergic children.
Researchers are now doing a larger follow-up study of children with egg allergies to test desensitization therapy in kids with allergies of all levels of severity, and to determine whether children must continue daily doses to receive lasting benefit. Duke is enrolling children in peanut and milk allergy studies, as well.
The therapy is based on the same basic concept behind treatments for patients allergic to grass, pollen or bee stings.
Seasonal allergy sufferers are given shots containing small amounts of allergens. Similarly, people who are very allergic to bee stings can be desensitized if they receive shots containing bee venom. Over time, the body's immune system gets accustomed to the allergens and is less inclined to react violently when the patient is exposed.
Burks said more research is needed to support the use of oral desensitization therapy. But he said that if the therapy works for egg, milk and peanut allergies it should be effective for any food.
That's great news for parents like Andria Youngberg, whose son Tyler, 7, is seriously allergic to peanuts, milk and eggs.
The family doesn't frequent restaurants because it's too hard to avoid Tyler's trigger foods. Every event has to be carefully orchestrated, Youngberg said.
This weekend, for example, Tyler will attend a birthday party. While the other children munch on pizza and birthday cake, Tyler will eat homemade vegan pizza and a peanut, egg and milk-free cupcake sent from home.
Tyler, who is participating in the follow-up egg study at Duke, has all but lost his sensitivity to eggs since starting therapy 11 months ago.
"To know that maybe in his lifetime that he can be desensitized or even cured is a huge relief," she said. "I'm thrilled he's going to have a chance at a totally normal life."
Staff writer Jean P. Fisher can be reached at 829-4753 or [email]email@example.com[/email].
Our RAST results are FINALLY back (on peanut, but egg #s are not back yet)...so, a little history for those who haven't followed the whole thread...
started the study in March '05 w/ a RAST of 25, #'s went to 52 at 6 months (typical of all in the study), then back to 25, then this past March it was 15.8, so his peanut RAST is now.................................
Can you believe it? I am still slightly in shock! When she called she said she had an early Christmas present and she wasn't kidding!
I was so flustered that I didn't get details on how the other kids did, except she did say they are all following right along the pattern, so I guess they had good drops too. When she calls back w/ the egg #s I'll try to remember to ask.
Ok, now I'm going to go let this all sink in a bit...it is a strange feeling to pray and pray and pray for something and then get it, you know?
Anyway, if (when) he goes below a 2 he will be food challenged...we still go back in March and up his dose and do blood work, then we'll go from there pending the results.
That is so great to hear! Congratulations! Keep us posted.
I can't tell you how encouraging it is to hear that! Thank you SO MUCH for sharing all of this! That's WONDERFUL!!!!!
Wow! Outstanding! I have been checking for the update. I am so curious about the egg #s. Don't see why they wouldn't follow the same pattern. Could you give us an update on his previous egg #s?
My ds latest RAST for peanut about 2 weeks ago came in at 4, a drop from 7. I, too, am excited by the low #s. Did you happen to read my 50/50 chance post? That should make you more excited!!!
Thanks to you and your son! It is nice to have "insider" info on this study!
Congrats a million times...... I hope that one day they will also test this with wheat. Keep us posted with the egg numbers.
2boys2luv - To answer your question, I didn't enroll my daughter in the Tampa study and never heard anything else about it.
Melissa (or anyone),
Congratulations on your wonderful results! I am very excited for your son.
I've read the press releases and most of this thread. This all seems very promising and it is my greatest source of hope that someday my dd's won't have to worry for their safety so much.
My question is: This study seems to only involve young children. Even if it gets "approved" for use in 5 years, my girls will be 8 & 10 years old. Do you know if there is an age limit on which they hope to prove the treatment successful?
I don't want to get my hopes up that this will someday help my girls if there is no chance of that. I would still be happy that it would help other children, but if I am honest I have to admit that it's very important to me that it help MY children too.
I don't think an age limit will be an issue. In fact, in a related study at Duke using under the tongue drops of peanut, the age for the study is 6-somewhere in the teens, and then if they ever do a true "vaccine" study, it will be in adults only first. So, once it is proven effective, I think it will be for all ages, probably over age one at least though.
Melissa, do you know the age of the oldest child participating in the study you are doing now (not the drops). Thanks!
I e-mailed Dr. Burks with my question last week. I did not expect to receive an answer, let alone one directly from him, but here is the e-mail I received from him yesterday:
"Thanks for your note and interest in our studies. We are working on this study with children of all ages. While we think it may be better earlier, we are working with much older children and adolescents now.
Well, there you go, a much more authoritative answer than I could give...I think our original study went up to age 8, but I'm just going on memory...it's been tweaked and expanded since we started and I'm not up on all of those changes.
Melissa, any numbers for the egg yet? Just curious...
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