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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...

Monday, September 10, 2012

Smiles--September 10, 2012

Today I was told by the little guy as soon as I picked him up from school that he had a smile on his face all day. He was just beaming and you could tell he was proud of himself. The teacher gave me the thumbs up and said it was a great day.  That was so good to see. Hearing about days like that where he can turn it all around and tackle school with a smile makes wading through all the rough days worth it.

That is the same way I feel about peanut dosing right now.  After his rocky month of August, he has done a great job with his last 6 days of 75mg. It seems all his immune system needed was a little pep talk and going back up this time hasn't even bothered his allergies.  No extra sneezing or stuffiness in the morning. He may still get sick during this dose, but if he does I am more confident that it is just due to one of those fluke circumstances and not his inability to tolerate it.  Who knows what the next dose will bring but for right now, he is happy and I'm relieved we can finally enjoy a couple of tiny victories. 

To be continued...

Thursday, September 6, 2012

7th Clinic Visit--September 5, 2012

Here we go, back where the little guy started 6 weeks ago. After his one after school reaction last week, he did great the rest of the week.  Of course, once I told him he would keep throwing up after school unless he drank the water I packed, his lunch box magically started to come home empty with all the liquids gone.  He is a quick learner. 

He did a good job at clinic yesterday.  He didn't have any trouble going up on his dose, back to 75mg of peanut protein.  That is 1/4 of a peanut.  The allergist is hopeful that staying on the 50mg dose for a month will be the push he needed to tolerate it.  I fixed a little desk area in the hallway and he just sat and drew houses for 2 hours.  It really is nice having that 2 hours at clinic to spend with him.  It is hard to find quiet time in the house after school when his sister is on the loose.

I did ask the question that I dreaded to ask--if he did not do well again going up on the dose, did that mean we were done? out of the study?  Thankfully, the allergist said that we could continue, we would just have to go back down to 50mg again and stay there at least for another month or so if we were willing.  Even though that would drag things out longer, it would be worth it.  Our whole family has sacrificed so much so far to be a part of the study, I hate to stop.  From talking to the allergist, I gathered that the little guy was one of the few having trouble with the study in the group he is with.  Seems like participants who had even higher IgE levels are not having any trouble escalating their doses.  The little guy had one of the lowest levels that was measured in this phase.  The allergist said that is why he really doesn't put much stock in the lab work because it gives no real indication how people will react. 

Today he took his second dose of 75mg after school.  I could tell it bothered his allergies some, but he never became quiet (our doom signal) so everything went well.  That is an improvement from the last time he did this.  If he can make it through the weekend without getting sick, I think he will be o.k.  He seems to really like school--some things he will tell us but the majority of the day I am told is a "secret".  At least he is smiling when I pick him up and is non-stop energy until his head hits the pillow at night.  Now that the initial stress from school is over, hopefully peanut can have some smooth sailing for a while.  The little guy is certainly due.

to be continued...