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Thursday, September 20, 2012

8th Clinic Visit--September 19, 2012

What a busy day for the little guy.  As soon as he woke up this morning he told me his throat hurt.  I checked it out and it was only a little red.  He had a little sneezing and sniffling before school, but he didn't have a fever so I sent him on.  Thankfully, he had a good day despite his symptoms and I never received a call from the nurse.  In the meantime, I called the study coordinator to tell her about the little guy's symptoms.  She told me to bring him over after school and the allergist would check him out to see if he could escalate the dose.  You have to be very careful with illness when dosing the peanut, and doses are always to be held if a fever is involved. 
When I picked him up he looked worn out.  But we soldiered on in and even the allergist agreed he didn't look like he felt very good.  He didn't have a fever, so the allergist felt we were OK to try.  Especially since he didn't get sick on Tuesday--sometimes a reaction will happen the day BEFORE you start showing signs of illness.  I set him up with his paper and pens to draw and he showed no signs of trouble the whole 2 hours!  Yay!  He is now up to 100mg of peanut protein, or 1/3 of a peanut!

Just when I thought my worry brain couldn't process anymore yesterday I was given new paperwork from the allergist that the study protocol is changing--right now.  The original schedule had the little guy going back 5 more visits to escalate his doses--125mg, 156mg, 190mg, 250mg and then 300mg.  Now, starting in 2 weeks he will go to 200 mg and then his final visit in another 2 weeks will be the 300mg!  This change is based off the fact that research is showing the larger doses are tolerated better, so moving faster appears to be safe and well tolerated.  The new protocol also cuts his 1 peanut a day maintenance down to 3 months from 4 months. 

The major change that has me worried is that once he can pass his food challenge AND have his blood IgE to peanut below 15 he will have to intentionally avoid all peanut products for one month and then go back for another challenge to see if he actually has developed desensitization versus tolerance.  They have added this step now to try to give a better assurance of patient safety after the study is over. 

The little guy has a lot to overcome in the next month.  We have to start weaning his stomach medications off so that he should go to maintenance dosing without them.  I thought we had at least 10 weeks!  We only have 4!  He will be able to go slower if he doesn't tolerate the big jumps.  Something tells me though given all the good days he has been having, and even being able to tolerate his dose with a bad cold, I think he is moving in the right direction. we are facing the fact that in as little as 4 months he could be eating a peanut butter cup or peanut M&M.  I will continue to pray we can get there.  He has come so far and I have seen so many positive changes in him.  Quoting a phrase I am told on a regular basis, "Just take it day by day".

to be continued...

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