big day at duke tomorrow/research study

Posted on: Mon, 06/19/2006 - 9:57pm
melissa's picture
Joined: 07/05/2004 - 09:00

Hi all,
Tomorrow is the big day (rescheduled from last month when DS was sick)...we leave tonight for Duke and the big challenge is tomorrow (don't want to bore those who keep us w/ this...quick catch up: see thread in Research re: "child invited to participate in research study"...DS who now has the equivalent of one peanut a day will see how high he can safely go, up to 6 peanuts. I'm nervous but doing ok. He has to have an IV, which is bad enough for a 3 year old, then all the yucky peanut stuff. If all goes well, we will be finished by lunch time tomorrow, then go back THursday AM for his new dose of 600 mg (the equiv. of 2 peanuts). I won't be able to post until Thursday afternoon/evening.
I know the first 5 kids in the study got to 6 peanuts...I think they've done one or 2 since then but I don't know how they did. Keep in mind DS had the worst reaction on the first day of all but one in the study. So I'm hopeful but very cautious as well.

So, whatever you can "put out there" for us, a prayer, a positive thought, I would very much appreciate it, and will update as soon as I can.

Posted on: Mon, 06/19/2006 - 10:17pm
mommamia8's picture
Joined: 11/13/2005 - 09:00

Melissa, I hope you and ds all the best tomorrow! At least some other kids went first and seemed to have success! You both will do great!

Posted on: Mon, 06/19/2006 - 10:38pm
momma2boys's picture
Joined: 03/14/2003 - 09:00

Melissa, my thoughts will be with you and your son tomorrow. I hope it goes well, without any problems. I just wanted to say thank you again. I feel like you are doing this for all our kids, (and adults) with PA. I can imagine how stressed you must be!

Posted on: Mon, 06/19/2006 - 11:04pm
brimor's picture
Joined: 06/09/2000 - 09:00

Good luck Melissa - we're sending prayers for you and your son. Please update us when you get a chance.
Liz, mom to:
B: age 14 with asthma, bee sting allergy, mild EA's and eczema
M: age 11 with asthma, peanut & nut, severe EA's and eczema
A: age 6 with asthma, peanut, nut, fish, penicillin, severe EA's and eczema

Posted on: Mon, 06/19/2006 - 11:11pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

I wish you well. [img][/img]
Not as advice to anyone, just personally, but if there were a study in the Chicago area, I might look into it. Is this like SLIT? I can't remember.
Another thing I can't remember, and not sure if it matters, I don't know, but what was your child's allergy category, and does he have Asthma or RAD? No advice, but I'm wondering if my oldest would be a candidate, and not even sure if all that matters or not.

Posted on: Mon, 06/19/2006 - 11:16pm
melissa's picture
Joined: 07/05/2004 - 09:00

This is like SLIT, except this is not in drop is actually ground up peanut that we mix w/ applesauce or yogurt...we started (w/ the dr. at Duke) at a teeny amount and have worked our way up to 300 mg, or roughly one peanut.
DS does not have asthma (knock on wood) but other kids in the study do. When he started the study his RAST (ImmunoCap) was 25 and it is now 15 (one year later)...not sure what class that is, maybe 4?
Duke is now starting another study for children ages 6+ using the same methods but only in drop form, basically SLIT.
Hope this helps.

Posted on: Mon, 06/19/2006 - 11:45pm
Wildone1's picture
Joined: 02/28/2006 - 09:00

Thank you and God bless you and your son. We will be praying for you.
I know it will turn out for the best. You are my hero.

Posted on: Tue, 06/20/2006 - 12:12am
jtolpin's picture
Joined: 05/28/2003 - 09:00

Good luck!
[b]* Obsessed * [/b]

Posted on: Tue, 06/20/2006 - 12:53am
Lori Anne's picture
Joined: 07/13/2005 - 09:00

I wish you all the best. Sending positive thoughts and prayers too.

Posted on: Tue, 06/20/2006 - 1:09am
MommaBear's picture
Joined: 09/23/2002 - 09:00

Quote:Originally posted by melissa:
[b]When he started the study his RAST (ImmunoCap) was 25 and it is now 15 (one year later)...not sure what class that is, maybe 4?
I'm not sure, might depend on the reference range the lab the test was performed at assigns to the test. But this was my cubs *first* "allergy testing". a few years later, he was retested, can't find my copy of the results, it's not like I look at them every day [img][/img] .....and I'm a bad mommy for misplacing them.....but basically, he moved into a "Class 6" allergen %ref around 6700 at that time and allergen in KIU/L >100. (After years of neurotically "strict avoidance" and homeschooling.)
I'm not sure if he would be a candidate.........
I *do* however have a copy previously scanned of his *first* allergy testing. Not the "Class 6" results (which also revealed several other treenut and legume allergies near or at the same level...)
[i]General Disclaimer[/i] yadda yadda yadda...: I am not offering advice in any manner form, just describing my own highly individual, unique and personal situation. IMMV.

Posted on: Tue, 06/20/2006 - 2:19am
Sirimon's picture
Joined: 02/01/2006 - 09:00

Best of Luck. Keep us posted!


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