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Friday, June 20, 2014

A Little Bit of Advocacy (E-Mail I Sent to Clinical Trial Coordinator Friday Morning)

Dear (Clinical Trial Coordinator),

Because it sounded like maybe I had not been clear about what Susan's symptoms were like on Wednesday, I thought it might be good if I provided a recap.

Last Thursday (June 12th), Susan became nauseous while in gym class (as it was the second to last day of school, and it was a short class period, they were not doing anything physical). She went to the nurse, who called me.  The feeling came on quickly and resolved without Susan ever vomiting.  As you know, I called and spoke with you and then spoke with Dr. Pongracic.  

Susan ate her lunch after feeling nauseous without issue (around 10:50 am -- shortened schedule = early lunch).  When Susan took her 45 mg peanut dose (in a smoothie) around 1:10 that day, she struggled.  She was drinking it more slowly than usual.  She told me she was fine, but, I could tell that it was hard for her.  She had a very unusual burp and then, before finishing her smoothie, vomited violently.

On Dr. Pongracic's advice, we withheld her 45 mg peanut dose on Friday, June 13th.

As you know, she updosed without issue on Tuesday, June 17th, to 60 mg of peanut protein. She took that dose shortly after 11:00 am.

On Wednesday, June 18th, at about 11:15 am, she had a period of feeling nauseous accompanied by what were essentially dry heaves. She vomited a small amount of bile, but, nothing else.  I believe this is because she probably did not have anything in her stomach, as she ate breakfast at about 7:15 am.

As you know, we came to the CRU for her 60 mg dose on Wednesday.  We both appreciated that this was offered to us, and I know Susan was glad to be there for that dose.  Of course, the 60 mg dose Susan took at the CRU was uneventful.  On the way home, she had one of those strange burps again (this is the only time she has had such a burp and then NOT vomited).

On Thursday, at about 10:00 am, Susan had a similar episode.  She felt nauseous, accompanied by what were essentially dry heaves.  She vomited a small amount of bile, but, nothing else.  She ate breakfast at about 6:30 am, so, it was likely that she did not have anything in her stomach.  She was crying and saying that she was "scared" about taking the 60 mg dose later in the day, because she was worried about what would happen.

We were with a friend who has medically fragile triplets.  They all have digestive issues and my friend suggested Susan might feel better if she tried to keep something in her stomach. Susan ate a granola bar and drank orange juice after this episode and felt better.

She ate lunch at about 11:30 am and felt well enough to take an on-ice and then an off-ice skating class.  While she was in those classes, I talked with you.

She snacked on dried apricots around 1:15 (and though I encouraged her to eat something a bit more substantial, she declined).  She had the same very unusual burp she as had several times now before vomiting and at about 1:50 pm, she vomited (mostly only dried apricot bits and bile) until she had dry heaves.  As you know, I called you again after this episode.

Susan immediately felt better, and snacked on Saltines, pretzels and Sprite.  She ate dinner without issue.

As per your recommendation, we withheld her 60 mg dose yesterday.  

While there are few symptoms to report other than the vomiting and tremendous fatigue, I would add that Susan has been grouchy and touchy in a way that is unusual for her the last few days.  It is my strong impression that she is using all of her resources to hold herself together physically.  I think she feels unwell in a way she cannot articulate, and that evidence of that is clear in her mood and demeanor.

I know you are working on a plan, and we are looking forwarding to hearing what you would like us to do.  If her dose is going to change, I think I will probably have to come to Lurie to pick up peanut in the proper concentration.  (If I am going to need to do this, I would like to try to avoid Friday rush hour, if possible.)

Thank you.


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