SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital

[AdminCM]

SLIT study - restarted 06-02-10 (non-placebo): Arkansas Childrens Hospital

This is mommabridget's thread about her DS' experiences participating in a clinical trial.

[mommabridget]

I have not updated in a very  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.

 

[CMdeux]

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?

[mommabridget]

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.

[CMdeux]

I'm following along with you, MommaB!!   

[mommabridget]

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. 

[CMdeux]

Oh, how disappointing.

  {{hugs}} to him-- and to YOU-- for going through this.

[Mookie86]

How disappointing and scary 

[Macabre]

Oh wow. I'm sorry.  How scary and just upsetting. Yeah, this allergy sucks. 

[twinturbo]

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.

[mommabridget]

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 

[booandbrimom]

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. 

[Macabre]

Oh mommab I am so sorry.  (((hugs)))  Sorry that he's had such a tough year mostly.  I'll be thinking about y'all.

[CMdeux]

  It's not easy. 

[mommabridget]

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!!!