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Title: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: AdminCM on September 13, 2011, 12:11:22 PM
This is mommabridget's thread about her DS' experiences participating in a clinical trial.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on September 19, 2011, 10:52:27 PM
I have not updated in a very :misspeak: long time! DS is still faithfully taking his SLIT drops daily. He will have another double blind food challenge next month - October 13 and 14. We do not expect a "pass", just HOPEFULLY increased tolerance. He has been on the highest drop dosage for several months and still gets mouth tingling every day. I will post all the food challenge details.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: CMdeux on September 19, 2011, 11:31:56 PM
I was going to ask once the dust settled!
I was wondering when I pulled the thread over.
I hope that the challenge goes well. That tingling is pretty freaky after so long at the same dose, though, isn't it?
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on October 13, 2011, 10:39:45 AM
Freaky? YES! He says he gets "impending doom" feeling with every dosing :/
10:35 am -- the first food challenge has begun. Skin testing shows wheals, but the largest one is only equal in size to the histamine control. It use to be double the size.
I am sitting on pins and needles and prayers are appreciated.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: CMdeux on October 13, 2011, 11:36:42 AM
I'm following along with you, MommaB!! :heart:
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on October 13, 2011, 02:02:01 PM
Bad day, got to dose 5 and complained of a lump in the throat. Gave epinephrine. Enough protein to feel really bad, but has not vomited. So riding wave after wave of nausea, stomache cramps, chest tightening, itchiness, hives and feeling like crap.
Also given zyrtec, benedryl and albuterol. Hooked up to BP machine and pulse ox -- both are good and he just fell asleep.
He's never had a reaction that has lasted soooooO loooong. He usually throws up. He wants to but will not force it.
The hives come and go and come and go...as does the other things we can't see -- chest tightening, stomach cramps and itching.
This sucks -- this damn allergy.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: CMdeux on October 13, 2011, 02:25:16 PM
Oh, how disappointing.
:grouphug: {{hugs}} to him-- and to YOU-- for going through this. :heart:
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: Mookie86 on October 13, 2011, 04:15:04 PM
How disappointing and scary :-[
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: Macabre on October 14, 2011, 06:35:51 AM
Oh wow. I'm sorry. How scary and just upsetting. Yeah, this allergy sucks. :heart:
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: twinturbo on October 14, 2011, 04:27:55 PM
So, so sorry to hear that. As hard as it is when I hive and vomit it's always harder for me to see my kids go through it.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on April 29, 2012, 03:09:32 PM
Well, it's official -he dropped out of he study. He dreaded taking those drops everyday and stressed over it. In addition he has dropped out of school and pretty much life :-/ Growing up is tough enough .. it's been a really tough year for him :-[
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: booandbrimom on April 29, 2012, 06:36:31 PM
MB, I'm so sorry. That must be so disheartening. I think our kids are so courageous for even trying these studies though!
My mother keeps reassuring me that there are many paths through life and that I should not be focused on the college-right-after-HS thing. I'll pass her advice on to you too. I think our kids are going to need a little extra time to figure all this stuff out. :grouphug:
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: Macabre on May 09, 2012, 10:19:02 PM
Oh mommab I am so sorry. (((hugs))) Sorry that he's had such a tough year mostly. I'll be thinking about y'all.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: CMdeux on May 11, 2012, 02:42:13 PM
:grouphug: It's not easy.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on October 14, 2013, 01:20:23 PM
Bumping this topic. Yes, DS did drop from the SLIT study. He stayed in the research as a "control". Now they have asked him if he wants to participate in a new study -- the patch. He has agreed (totally his decision). It is a double blind placebo controlled study.
ACRH is over 4 hours away and he may end up with the placebo, again!! But that is not the worst part -- the food challenges are just awful. All in the name of science. He is ok with doing the food challenges (beginning and end of study -- usually 9-10 months interval). He did HATE doing those drops daily. Putting on a patch should be easier.
I will start a new thread and diary with the new study. Double blind food challenges scheduled for October 30 & 31st. What a roller coaster!!!
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: Macabre on October 14, 2013, 02:07:42 PM
MB what did he hate about doing the drops? My DS is doing SLIT (lower concentration than what is in the studies). Being home to take the drops has proven the greatest challenge for him so far. And he has had no IOFC.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: mommabridget on October 14, 2013, 02:54:38 PM
When he got to the maximum dose, he would get a "dread" feeling before doing the drops. He had to force himself to take the drops and hated the feeling it gave him for several minutes after -- every day. The drops also caused mouth sores that would get huge and painful. The drops irritated any sores and they took weeks to heal.
I'm not sure the dosage amount but it was enough for him to taste it, hate it and caused extreme anxiety. It was once a day-- I think the OIT amount done 3x a day is less. Hope it works for your DS. After over a year of drops, my DS made the decision that enough was enough and dropped from the study.
Title: Re: SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital
Post by: Macabre on October 14, 2013, 06:02:35 PM
Yeah--it sounds like it was very tough. Obviously he made the right choice.
Dr Mary goes at a much slower pace than the studies. This will take another three years at least. DS takes his drops three times a day. And his also include celery, cat, dog, rabbit and environmentals.
It will be interesting to see if they start bothering him, too