DS entering new clinical trial at Ark. Children's Research Hospital

[mommabridget]

DS previously participated in a SLIT clinical trial at Arkansas Children's Research Hospital.  I kept a detailed thread of the progress (or lack thereof).  Here we go again!  This study will be the peanut patch.  DS is now 20 (diagnosed at age 1) and consented to this study on his own. 

Normal to entering a study,  DS must endure two (double blind placebo/peanut) food challenges.  Basically, he has two food challenges on two consecutive days.  We don't know which day will involve the peanut protein. The food challenges are done at the beginning of the study and at the end of the study.  Yesterday he had the first one.  This is the first time that I was unable to be with him. His older sister went with him.  So these details are pretty much second hand:

DD called me about noon yesterday and said that he was reacting. So I asked her if he had been given Epi yet.  She said that he had not. That he did not know he was reacting this time until the fourth dose. So I asked if he had a rash and she replied "not really". 

I then asked if his eyes were bloodshot or swelling. She said no swelling but they were definitely bloodshot.  Then I asked does he have a lump in his throat to which she replied "yes".  So this is the point where I begin to get a bit nervous needless to say.  At that point I get very clear asking if the doctor is there and she said no that the doctor had been paged and the nurse talked to the doctor.  I asked is the nurse there and DD replied yes he's she's right there.  Very clearly I told DD that DS had never ridden out a reaction without epinephrine.  I also said the last time when he began to react the doctor asked do you have a lump in your throat and when DS said yes, they ordered the epi-immediately.

DD could tell that I was getting nervous and giving instructions to her as to what the nurses and doctors should be doing.  She replied okay mom I'll tell them (a bit sarcastically).  She pretty much said she had to get off the phone and hung up the phone. So I was extremely anxious at this point.  about 3 to 5 minutes later I received a text that they were giving DS the epinephrine. I then got a text message with a picture showing them administering the epi. 

I waited a minute or two and sent another text asking if he was feeling better and she replied yes, much!  They had to stay at the hospital for four hours, being monitored and getting Zyrtec. 

Today will be the second of the two food challenges and it will be the placebo so it will be a much easier day!!  He will then be given the patch.  They will put it on his arm or something and wait one hour and then remove it and observe him for any type of reaction.  He will then be given the patches to take home and place on himself for one hour each day.  He will go back in two weeks and they will put a patch on him and wait two hours and observe him. He will be given the patches to take home and do himself for two hours everyday. And this pattern will continue of increasing the amount of time the patch is on him until he gets to leaving the patch on all day and changing it everyday.

If you took the time to read this, thank you!  I'm sorry I am so wordy. But this is my way of keeping a record. Thank you!

[twinturbo]

Best of luck to him and thank you for posting. I was wondering what was being done with the patch these days. What a wild ride as emergency operator mom. A great example for us with younger kids on how to train them with each other.

[Macabre]

Oh wow.  What a scary time that must have been! 

I will be watching this and reading everything. Thanks for posting.

[GoingNuts]

Wow, what a tense day for you!

Your son is doing something awesome. I hope it will be a Positive experience for him!

[mommabridget]

DS is now wearing the patches 24x7 with no noticible difference.  Could be full dose/ half dose/ or placebo.  He is going to Little Rock Children's tomorrow to get more patches and I think they do bloodwork as well.  It will be interesting to see if he is in the control group again.  Of course, we won't find out for several months. 

Nothing else to report except he is staying the course.

[CMdeux]

Good to know that things have been uneventful so far.  I really hope that things go well this time and that he experiences personal benefit from participating.