OK, guys, we're through the first part. I'm exhausted! However, my son passed (meaning failed) his peanut challenge and didn't react to the placebo, so we're in. We started his medication yesterday.
I asked about posting/blogging about the trial and their response was "yes, please, the more the merrier." So if you have questions about FAHF-2, or about trials in general, let me know.
The trial manager mentioned that there will be two more coming up in Chicago this year: a peanut patch:
http://phys.org/news/2011-03-peanut-allergy-patch.html (http://phys.org/news/2011-03-peanut-allergy-patch.html)
and an oral tolerance trial for wheat. The patch has already been released in Europe and they will be testing it at several sites throughout the rest of the world, including California for those of you out there!
Are you using the digestive tea as well? I'm not part of the study but I see Dr. Li privately for the formula.
No! What the heck is the digestive tea?
My son has to take 30 pills a day for this, so I can see why you'd need some digestive tea. :) They did comment that they're in the process of reformulating the medication so patients will have fewer pills in the future, but for the length of the clinical trial he'll need to take all 30.
Yeah but it's mini-pills, right? If I get a time (hah!) I'll take a pic of what I have and upload.
Not that mini! Bigger than M&Ms. I, too, will try to upload a picture later.
The challenge is getting him to remember to go to the nurse at school. They don't allow high schoolers to randomly pop 10 pills in the cafeteria. :)
Oh heck yeah then, show and tell later when I can bolt the kids down for 15 min.
Boo, can you post the general FAHF-2 protocols? Age range, exclusions for pre-existing conditions, RAST numbers needed, etc.?
Quote from: starlight on April 24, 2012, 09:36:52 AM
Boo, can you post the general FAHF-2 protocols? Age range, exclusions for pre-existing conditions, RAST numbers needed, etc.?
Great question! First off, they are only taking 10 kids right now, so I think the study may be closed. (My guess is that they can't manufacturer enough medication for more.)
Age range was 12 and up. A severe reaction requiring intubation or an allergy to corn were the exclusions, plus you have to be able to take pills, as there are 30 a day!. RAST needed to be above a 0.7 and SPT above a 3mm to get in.
There is a DBPCFC at the beginning and end of the study, so parents/kids also have to be willing to go through a reaction in a controlled setting. That was NOT fun. However, it was very well controlled - my son did his last Thursday and, in the end, only needed Benedryl. The lump in the throat and a significant reduction in his peak flow were enough for them to call it.
There are weekly check-in calls bimonthly visits - I think the end challenges are in September, with follow-up through October.
The pills smell really funny! I'm sure they would have to make the placebo also smell funny. I so hope he doesn't get placebo.
Not trying to hijack the thread but for some reason I could not pm you to ask. Where can I find more information about the patch trials? Is that one that will be in chicago? Are the trials generally only for age 12 and older? Thanks!
Quote from: IowaMom on April 24, 2012, 08:15:01 PM
Not trying to hijack the thread but for some reason I could not pm you to ask. Where can I find more information about the patch trials? Is that one that will be in chicago? Are the trials generally only for age 12 and older? Thanks!
I don't know anything more about it at this point...the study investigator just mentioned that there would be two more coming up this year. (I was lamenting how long it took to get a Chicago trial!)
Here's the page to watch:
http://www.childrensmrc.org/clinical_trials/allergy/ (http://www.childrensmrc.org/clinical_trials/allergy/)
I'll try to ask again in June when we go back.
Here's the more complete blog summary if any are interested:
http://foodallergybitch.blogspot.com/2012/04/btdt-got-fahf-2-food-allergy-clinical.html (http://foodallergybitch.blogspot.com/2012/04/btdt-got-fahf-2-food-allergy-clinical.html)
Glad to have the long week behind us!
Two questions:
During the challenge, what reaction level would have warranted epinephrine from the clinicians/MD?
Has son had the new "uKnow" peanut component testing done?
Quote from: ajasfolks2 on April 28, 2012, 11:14:22 AM
Two questions:
During the challenge, what reaction level would have warranted epinephrine from the clinicians/MD?
Has son had the new "uKnow" peanut component testing done?
Ajas, the question about epinephrine is a good one, but I don't know the answer. We did have a conversation about using Benedryl for this type of reaction and the doctor said it was appropriate. They clearly had situations during earlier trials where epinephrine was required so they were hesitant to go beyond the dose we did.
We've not had the peanut component test. I think it would be very interesting. My guess is that he has (at least) an Ara h 3 allergy, since that's the one that shows overlap with other legumes. Unfortunately, this allergy can be dangerous for the reason uncovered in the study...reactions can be slow to build and then hit:
"In a study of anaphylactic reactions to Soy, the majority of patients had a symptom-free period of 30-90 minutes between the early mild symptoms and the later severe and rapidly worsening asthma."
http://www.phadia.com/en/Allergen-information/ImmunoCAP-Allergens/Food-of-Plant-Origin/Legumes/Soybean-/ (http://www.phadia.com/en/Allergen-information/ImmunoCAP-Allergens/Food-of-Plant-Origin/Legumes/Soybean-/)
We basically treat all sudden asthma attacks with epinephrine at this point. :(
Ajas, I've been dying to know ever since you posted it...what were you looking for with regard to the peanut component test?
Is there a thread somewhere for this topic? I'd love to know what people are finding out!
(Never mind...I found the thread. I'm so lazy these days!)
Quote from: twinturbo on April 24, 2012, 08:13:40 AM
Yeah but it's mini-pills, right? If I get a time (hah!) I'll take a pic of what I have and upload.
Took me a while...but here's the pic:
(http://1.bp.blogspot.com/-MKZbWpYjZ7Y/T5_4PLkyLQI/AAAAAAAAAC0/1xFZHvX2PL4/s1600/FAHF-2.jpg)
Apparently every camera in our house except my daughter's cell phone needs attention right now. (And God knows, I don't do batteries. Or spiders. Or light bulbs.)
Quote from: booandbrimom on April 30, 2012, 04:34:03 PM
Ajas, I've been dying to know ever since you posted it...what were you looking for with regard to the peanut component test?
Is there a thread somewhere for this topic? I'd love to know what people are finding out!
I saw that you found this thread, but am sticking the link in here for others & to help with finding the thread again, if someone wants it:
uKnow Peanut Test (http://foodallergysupport.olicentral.com/index.php/topic,4997.0.html)
Thanks for the answers, boo!