March 18, 2014…

Matthew had one of his every-4-month checkups at UNC yesterday for the peanuts and we were finally given a date for open challenge.

This is both insane and awesome at the same time.  Insane because this kid that was (is?) so allergic to peanuts from a teeny tiny age is now going to have to eat peanuts in a controlled environment while I watch.  Awesome because this kid that was (is?) allergic to peanuts from a teeny tiny age is now going to have to eat peanuts in a controlled environment while I watch!

He started the peanut desensitization in March of 2009 and I remember that day so clearly because we were at Duke (the study moved hospitals part way though) and I had 2 month old Amelia with me who was still at the refusing to nurse/sleep/do anything but lay on me point in her existence.  I was beyond exhausted and stressed but there was NO WAY we could say no to this opportunity to potentially rid Matthew of this stupid ass allergy he was diagnosed with.  We rolled in and they hooked him up to IV’s and monitors to watch and see what happened while they very gradually introduced 1/3000th (approx.) of a peanut to his system.

Nearly 4 years later, he eats 4000mg (about 13 peanuts) daily in a milkshake (that he hates) and has no problem with it in terms of allergic reaction.  We don’t worry about cross contamination or decontamination or any of that these days – it’s both liberating and freaky when we’ve come off years of having to be so, so careful.  It took over a year to get him up to the 4000mg dose level, and he’s been there ever since.  His CAPRast numbers shot up after the first 6 months (which is expected) and have gradually been coming down ever since.  Yesterday’s blood draw results should be ready in a few weeks, so we will see where he is at.  I am hoping for 30’s!  (at his maximum he was almost 1400!)

March 18th will be an interesting day – one we have longed for!  After the challenge he has NO DOSES for 30 days – and then we go back again for another challenge and see what happens.

I can see the light at the end of this – and it’s a beautiful sight!

 

September 2012 CAP Rast

118.5

Whomp.

I was so hoping we’d break through 100.

June 2012 CAP RAST

…145

Down from 220.  (34% or so drop.)

YAY!

Jan 2012 Peanut Update

We were over at Duke yesterday for the 4 month check up.  I was just reading back – looks like I didn’t post the CAP RAST number from late August – it came in at 236.  Still a great drop… he seems to be averaging 20-25% decreases now… He had more blood drawn yesterday so we’ll see what that comes in at.

We heard yesterday too – very sad – a first grade girl in VA died on Monday from a peanut reaction at school.  Still being investigated – there was apparently an action plan in place – but obviously it did not work – such a tragedy.

This is the skin testing pic from yesterday: (top left is undiluted peanut – full strength – bottom right is histamine control.)

The enhanced redness to the left of that undiluted peanut is from me scratching all around the test site as he was patiently waiting his 15 minutes for it to be done – that’s not extended hive.



Peanut update!!

April Cap RAST number is 297!!

Down from 386 – another great drop!!!

GREAT NEWS!

Here I am posting that we won’t get CAP RAST til Jan – and we got them TODAY!

387!!!

AWESOME!!!!!!!!!!

More Peanut Updates

Matthew had his 3rd “4 month” checkup at Duke on Monday. He had skin testing, and they took more blood – we likely won’t get those cap RAST numbers until January. They tend to batch run those tests, so there is often a wait for “the number”.

Anyway – skin testing… so this looks pretty crazy, right? Some of it is. The IMPORTANT thing to know is that the top row is peanut – and THOSE ARE GETTING REALLY SMALL!!! YAY! Pam and Jan opted to do a bunch of environmental allergen tests too this week – to see if we can get to the bottom of the severe, random reactions we’ve seen in Matthew over the last few months. We knew that they were not peanut – so the question then was – WHAT was sending him off?

Grass.

Weeds.

Trees.

Oh MY! Look at those hives and wheals! The mack daddy big one in the 2nd row from the bottom is GRASS. (Which sure explains this massive reaction back in April – he had just come in from playing outside while Ken was cutting the grass!)

The top row left to right is most concentrated to least concentrated peanut protein. Interesting that the 2nd (more dilute) is bigger than the most concentrated? The rest of them are considered negative since you have to subtract the saline control reaction from their size – saline is bigger, so those are negative now. PROGRESS!

His CAP RAST numbers have gone from around 866 (start) to 1206 (expected jump up) down to 540 (one year into program) then 524 (4 months on 4000mg) this past July – so the last drop wasn’t very much. Keep your fingers crossed for us that it’s a little more dramatic this time!!

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