Blood Results are back

At our initial appointment they drew blood to check Beck's IgE levels.

These numbers seem to fluctuate through the years, so I am curious to learn more about why that happens.  (I've never gotten clarification to my main question - if he has been exposed recently to an allergen, does his IgE level indicate that?)

What was clarified to me this trip is:
IgE levels don't indicate severity of reaction.
IgE levels tell us how likely it is you'll have a reaction.

The other interesting tid bit I learned is that skin tests have a 50/50 chance of producing a false positive or false negative (not very accurate).

A RAST test (done by drawing blood) measures the level of allergen-specific IgE in your blood. In other words, it measures the concentration of antibodies your body has created against a particular food allergen.  What's interesting to note is, not everyone with the same IgE (or RAST score) will react in the same way to a food allergen.  That's why those with a medium risk score have often been advised to minimize exposure to a specific allergen!


Here is what's known as a RAST scale, and how Beck has tested over the years to his severe allergies, which are peanut and walnut:

A Candidate

Yesterday we met with an allergist in Layton (near SLC).  He is desensitizing people that have food allergies.  I have met with a few other allergist also doing this, so I had my list of questions, and my skeptical attitude before our appointment.

Previously,
*  Stanford required a 4+ year commitment.
*  My allergist in Reno said no, don't participate, it's too dangerous (he wasn't doing the program himself, just heard about it.)
*  Allergist in Sacramento was awesome, but soon after getting in touch with her, we discovered we would be moving to Utah, and I put everything on hold.

My main question - "Is Beck too allergic or is he a candidate?"  
Dr's response - nobody's too allergic.  
We just have to take it in slower steps if reaction occurs. BECK IS A CANDIDATE!  

Many may not understand what this means for us, especially if you haven't lived with life threatening food allergies.  This is life changing for us.  I awoke at 3am last night and could not go back to sleep, due to excitement and pure amazement.  I cried to Scott explaining what this means to me.  Where in the world will I direct my built up anxiety level if i don't have to worry about peanut exposure?!  :) ha ha!


Perhaps you are curious how it works:

It is anticipated he will begin the desensitization program in 3-4 months time.  The Dr. does "groups" of kids at the same time, the current group graduates in May and the next group will begin.

We had blood drawn yesterday at our consultation, once the Dr. gets those back, we will have 2 more appointments.  Before beginning they like to get a good idea where all his levels are.  They monitor basically the IgE, breathing, as well as his eczema...

-  IgE levels - these are antibodies that attack antigens like bacteria or allergens.  Beck's current IgE levels are over 100.  This is bad.  Greater than 18 is considered "strongly positive" (anaphylactic).  But, as the dr explained yesterday, the IgE level doesn't necessarily mean how BAD his reaction would be.  It measures the likelihood of reaction.  Not severity.

- Breathing levels - they take pretty simple breathing tests into the computer to get an idea how much air he can move through his lungs.  When kids also have asthma, it can be harder to keep the body under control during OIT treatment. (OIT stands for oral immunotherapy)

-  Skin Prick - here's what I found fascinating.  He didn't even bother to do a skin prick.  He said it's a 50/50 chance that the skin prick will produce a false positive or a false negative.  He said, "We know he's allergic, I don't need to see his skin react.


After our next 2 visits we begin "Day 1" (as it's called.)

Day 1 visit is 8+ hours long.  On this day they will administered peanut protein in liquid form, into the back of becks mouth.  They do this every 15 minutes for 6 hours and watch for reactions.  The amount of peanut protein being given in these doses is very minimal.  But for kids like beck who have severe allergies, it is enough that it would've been something we would've avoided because it could cause death...  And in all the cases where it's been given not one single person has died.  Not only that, he's never had to send anyone to the ER.  They have occasionally had to give epinepherine in office, but majority of people just get stomach aches, which is fascinating.

After this initial "Day 1" we continue to go to the Dr's office every week, on the same day of the week (like always Tuesdays, or whatever day it is).  On this Dr's office visit day, they "up" the amount of peanut protein given.  We are there for about 1.5 hours to watch for reaction.  We are then sent home with this same amount of PP (peanut protein).

At home for the next 6 days we administer this PP morning and night - as close to 12 hours apart as possible.  He needs to be monitored for 1 hour after ingestion for reaction (no sleep, no school).  He also cannot exercise or do anything to elevate heart rate or body temperature for 1 hour before, and 2 hours after ingestion each day.

This continues for approximately 6 months.
During the 6 month process the PP changes from liquid form, to peanut flour, to actual peanuts.

After about 6 months he will be "desensitized" and his body will no longer send an overactive immune response when eating peanuts.  He will be required to ingest the "maintenance dose" every single day.  But you know, the maintenance dose isn't bad!  It's 8 peanuts.  That's pretty cheap daily medication.  And, it can be in the form of peanut butter, or peanut M&M's or a myriad of other things.  And, he can consume MORE than that amount, but must always eat atleast that minimum.

Absolutely miraculous to me.

During our appointment yesterday I had to seriously control myself from not jumping out of my chair to hug the Dr.  I could hardly contain my excitement.

At the end of the appointment the Dr turned to Beck and asked if he was excited.
Beck:  "Oh ya."
Dr:  "Do you have any questions?"

Beck:  "Once I reach my maintenance dose, can I eat peanut candies instead of actual peanuts?"
Dr:  "Yep, peanut M&M's are my personal favorite."

Beck:  "What if I don't even LIKE peanuts?!"

Which is actual a valid point.  Lots of kids have suffered so long they have a psychological aversion to peanuts.  Just seeing one gives them anxiety.  Beck is old enough this may work to his benefit or detriment.  He's lived in fear so long it will be hard for him to even touch a peanut (no joking).  But he's old enough, perhaps we can help him understand the processes going on in his mind.