Thursday, May 30, 2013

Day 3

May 30
Day 3! So today was the first day with no office visit.  We gave him the 6mg dose at about 7:30 and I waited as late as possible to drop him off at preschool.  We saw no signs of a reaction at home and we talked to the front desk staff and his teacher to make sure they knew what to look out for.  He's about to move up to the next class at school so we will probably be explaining this again soon.  His current teachers adore him and I know they were nervous this morning.  They are very sweet!  He was doing just fine so I left him at school around 9.  The window is about two hours to observe him for symptoms.  This was his first day at school this week so he wasn't sure what was going on.  He was fine with me leaving once he got some hugs and tickles from his teacher.  He's such a little ham!

We are going to keep at this dosing level for about two weeks,, so there will be less posts for a bit unless there is anything of interest.  The grandparents are going to have to handle this for a few days, I hope the kids make it easy on them!  It's just hard to leave with the long list of instructions and what if scenarios.  I feel like this week has been an echo of "Five o'clock and all's well!"  The calm is coming back a little at a time.

Wednesday, May 29, 2013

Day 2

May 29th
Today the hubby took him back over there for 2 hours and he got one 6 milligram dose. They kept him for a few hours (til lunchtime) and then he took him home for a nap.  All went well, they checked on him often and he was fine today.

Now we have a ziploc bag full of doses for the next two weeks in little sealed condiment cups.  We will mix applesauce into them and feed them to him once a day and keep an eye on him for 2 hours following each dose.  Day 2 is a little less nerve racking than day 1.  Well poor dad had to deal with a pee accident in the allergist's office, but they both survived.

We're looking forward to figuring out what our new normal will be, we aren't there yet. But the stress levels are slowly coming down.  

Very grateful for good friends and family who are checking in and keeping us sane.  And some new friends in the allergy world.  People don't always get how stressful this can be.  There have been a few folks who felt like their place in the world was to tell us how we shouldn't be doing this.  Wow.  This is our child, our decision.  We view this as long term life insurance in a sense.  And it's our choice, our pocketbook taking the hit.  Be scared for us.  But don't impose your opinion in a vehement way on a hot topic.  You wouldn't do it at work, don't do it to your friends.

The week is slowly looking up.  Keep breathing.

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! 

Tuesday, May 21, 2013

Day 0 - Desensitization decisions

May 21st
We had a long session at the allergist today - here's the lowdown:

  • His asthma is finally under control - YAY!  (insert cartwheels here!)  Sticking with the daily med for the long term as it seems to be really working. QVAR seems to be something that works for us.
  • We have a new allergy - boo - Hazelnuts (Nutella anyone?)
  • His body produced IGE in response to hazelnuts, pecans, and walnuts.  Anything over a 2 is considered an allergy.
  • Hazelnuts was about 2.5 - if that number goes below a 2, they'd do a skin test and if that was also negative would do a food challenge to see if he's allergic or not.  Not really an issue right now but just another nut we have to avoid from now on.  (sigh)
  • Pecans was about 4.5 - pretty similar to the numbers from Nov 2010.  Not his worst, we'll deal with this one later.
  • Walnuts was a 22.  Had to kind of laugh at that.  We might be looking at 3 years to get that number below a 2 on the IGE tests.  We'll just have to see how it goes.  In 2010 I think it was a 3.5 or a 4. Wow.
  • Next Tuesday (28th) I'll have him all day at the allergist to start the desensitization program.  I may be losing my mind in Brier Creek.  So if there's a mushroom cloud over that way, you'll know it was just me. :) 
Wednesday hopefully he'll be at the allergist for a few hours only. If that day goes well then we'll start doing the doses at home.  If not he'll be back at the allergist potentially Thursday and Friday mornings too.

Wish me sanity next week - wait ... wish me sanity every day.