Tuesday, January 29, 2013

Jacob's 1st double blind oral challenge to peanuts

Hi Dr. Rubinstein,

Just wanted to thank you for all your support in getting Jacob into the Peanut Patch study by providing all the paperwork that he needed.

I wanted to let you know that Jacob had his 2nd visit to the Packard Hospital for the Peanut Patch study today.  It was one of two double blind oral challenges, and it was quite eventful.
Jacob ended up needing epinephrine, and it was administered while Dr. Hugh Sampson was in the room.

I am still in shock myself that Jacob deteriorated so quickly, and I feel bad that I ignored the symptoms.  In fact, even the nurse onsite didn't seem to think Jacob needed epinephrine.  It wasn't until the Dr. Nadeau and Dr. Sampson stepped into a room "for a picture" that Dr.  Nadeau told the nurse he needed it.  I am so glad they were in the room. I worry about how far Jacob would have deteriorated if we didn't give the epipen any earlier.

This is what the challenge looked like in case you are interested.
10:30 , we start the appointment and we overhear a nurse discussing with a doctor that a previous candidate had to leave the study because he vomited over the placebo.  Jacob makes a mental note that reacting to a placebo would be a bad thing.  I tell the nurse that his symptoms are usually coughing, and a red dot on his face.  I make a note that he has no cough and looks very healthy right now.

11:00 :  1mg of peanut protein/placebo in a chocolate pudding with orange flavor.  Jacob thinks he feels a tingle in his throat, but it goes away.  He also starts getting a feeling of "hunger pains" in his stomach.

11:30 : 5mg ...  throat tingle and tummy is hurting.  But Jacob doesn't want to "jump the gun" if it's a placebo.  Throat always seems to get less tingly after the initial tingly feeling.

12:00 : 10mg...  pudding starting to taste really bad.  I notice one sniffle, but that's it.  I notice left eye turning a little red.  Stomach still hurts, but we're still worried it's psycho-somatic.  I assure Jacob that if his stomach really hurts, he's probably having a real reaction.  Throat feels tingly and maybe a little lumpy.  I ask nurse who looks in the throat and notices a "tiny bit" of redness.  The tingly feeling seems to go away quickly.

12:30  : 30mg.   Jacob is really hating the taste of the pudding.  after eating half of it, he says he can't eat it anymore because it tastes bad.  I tell him that's not enough reason to stop eating it unless he feels like he is having a reaction.   He continues to eat it.   Doesn't notice anymore symptoms.  I start wondering if he has the placebo.

12:40 : coughing begins.  starts off slow but progresses in frequency.  We are becoming sure this is the real reaction.  Tummy hurts, and left eye is red, his body is itching.

12:50 : nurse comes in , hears the cough, and calls the oral challenge finished.   They give him Zyrtec and take his vitals.  vitals are okay.  Lungs sound fine despite cough.  Throat has no edema.

1:15   :  zyrtec doesn't seem to help.  Jacob starts asking me for more medicine.  I suggest Benadryl, and after consulting with the doctor, they agree to give Benadryl since we asked for it.

1:30   : Jacob is still miserable.   I tell him to wait till Bendaryl kicks in.  His condition seems the same to me.  The nurse listens to his lungs and hears wheezing.  She decides to initiate a breathing treatment.   Just at this time, I notice Dr. Sampson and Dr. Nadeau poke their heads into the room.  I run into the hallway to ask if I could get a picture with Dr. Sampson.  After the picture, they watch the nurse give the breathing treatment.  Dr. Nadeau starts talking about epinephrine.  She says Jacob needs it, so Dr. Nadeau holds the breathing treatment up while the nurse gets the epipen.  The nurse finally administers the epipen.  Jacob tells me he is so glad they did.  He feels better instantly.   Dr. Sampson and Dr. Nadeau thank Jacob for participating in the study and Dr. Sampson reminds me of the importance of giving the epi-pen because the symptoms have a snowball effect.   He pointed out that Jacob was wheezing and his eye was very red, and he was scratching all over his body.  They then leave the room to continue with the  original purpose of Dr. Sampson's site visit.

1:45 :  all vital signs are normal.  Dr. Nadeau steps back in to check on Jacob. Nurse confesses that it was the first time she ever had to administer the real epipen to someone (even though Jacob was probably her 21st double blind oral challenge).

2:00 :  all vital signs are normal.  Jacob gets his appetite back and eats a hamburger.  Dr. Wilson gives Jacob prednisolone and gives me a prescription for two more days of prednisolone for Jacob, which I am very reluctant to give.


Day 3 should be the placebo, which is next Monday.

Regards,
Elaine