Tuesday, May 28, 2013

Day 1

May 28th

Day 1 for our desensitization.  I slept - eventually.  For a little while.  And woke up repeatedly.  And worried.  And dreamed about things that you don't tell your kids.  And breathed.  And prayed for sanity. :)  

We were at the allergist all day today - they gave him slowly incrementing 
doses of walnut (7 of them).  We started at 8:30am with something like 1milligram mixed into applesauce.  Think a restaurant condiment cup half full of applesauce.  He was mad that it was gone so fast (he had no idea what he was eating!)  Each dose slowly incremented upwards. The largest dose was the last one at 6 milligrams.  That's about 1/100th of a walnut.    I watched him like a hawk after each one and so did the nurse and doc.  We looked for facial swelling, asked him if his tongue was feeling funny, itchy, etc... Checked him for rashes, etc...

It wasn't particularly fun for me, but thankfully he's pretty clueless about such things and it was non eventful.  :)  He was really good too.  I made it almost two hours with just toys and then he started diving headfirst onto a rolling stool and crashing into the walls, and I figured it was time to break out the electronics.  I watched him like a hawk for the first half of the day, and then the doses got faster and faster, but he was fine the whole time.  The amounts they started with were REALLY tiny.  No needles or anything just sitting in a chair all day watching PBS kids and some stuff videos.  He seemed very happy to watch pbs shows almost all day.  Had to pack a lunch (good thing I did, the kid ate like he had never been fed before!).  They turned me loose in the late afternoon and I drove around the shopping center so he would fall asleep.  He napped in the car for about an hour and then we got dinner over on that side of town rather than fight rush hour.  

I keep hoping someone will duplicate the SAFAR (Stanford) trials on this coast.  If we lived out there, I would be BEGGING to get into that one.  Man, it would be scary to treat them all at once... but wow - if we could do that safely...  how awesome would that be?  His age or his asthma would probably preclude him, but we can dream.  And trials are "free".  It's the lack of funding at Duke and UNC for tree nut trials that is holding back more research here.  So ours is not a "trial", and it's not technically FDA approved as a treatment.  So it's out of pocket all the way.

The allergist teased me and asked if I got any sleep... I raised an eyebrow at him and he laughed, he said that was a very normal answer on day one for the moms of little kids :)  

So far so good.  I was a restless loony... but he didn't know.  So all is well.  I went to bed right after the kids did last night I was so tired! 

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