Friday, August 10, 2012

The Marveling Continues

We're still reveling in Abigail's success.  She's taking daily doses of peanuts in the form of sweet treats.  At some point, I'll need to stock up on more practical and healthy options, but for now, I'm enjoying her discovery of recently forbidden treats.

Trader Joe's has some really good peanut butter cups made with real milk chocolate and real peanut butter.  She's loving those.  From a technical side, I had to cut one in half and scoop out the peanut filling to measure it.  For protection, she needs 1 and 1/2 peanuts (or approximately 1/4 teaspoon of peanut butter) on a daily basis.  The filling measures 1/2 teaspoon which is about 3 peanuts.  She's been eating 2 of the peanut butter cups a day.  I'd say she's more than protected.

The four of us, my husband, son, Abigail and myself, went out to dinner Wednesday night to celebrate.  Abigail got to choose the restaurant.  The kid's meal came with plain M & M's.  With absolute wonder on her face, she realized that she got to eat them.  At age 9, the girl has never had an M & M.  We had chosen for safety and simplicity sake to not approve any foods manufactured in facilities that also make peanut products.  That ruled out M & M's.  She, of course, loved them.  Reality struck me, and I realized that I would no longer have an easily accepted excuse for all those unnecessary and unhealthy cookies and other treats that come as part of so many kid's meals.  When asked what type of cookie the kids would like as part of their meal at places like Moe's, Subway and Jersey Mike's, I've been quick to say, "Sorry, they can't have them. We have a peanut allergy."

It hasn't taken her long to realize what this means.  She's skipped ahead to Halloween, and is almost giddy with excitement.  I typically trade a non-candy treat for some of their loot.  Looks like I'm going to have to up the ante to make a deal this year.

The marveling continues at our house.  It's still hard to even conceive sometimes what the success of this peanut allergy clinical trial means to our family.  And, while we are incredibly lucky, or better yet, blessed, we are also so very humbled and grateful.  Abigail is just one of a very few in the sublingual immunotherapy trial who had the opportunity to challenge and did so successfully.  Some made it to the 3 year mark, challenged, and were not able to make it through all doses.  Those children will continue in the study either eating peanuts or doing drops.  Most of the kids won't challenge at 3 years because of study protocol changes.  Those kids will continue another 2 years before they challenge to better ensure their success.  And, as a reader commented, they had to leave the study altogether because of health concerns.  Her comment serves as a reminder that there are risks involved.  So, yes, we are marveling.

Tuesday, August 7, 2012

We are done!!

Abigail is peanut allergy free!  She did it!  We did it!

After the required IV, blood draw and skin test, we got down to business with the first flour food challenge. Even with cinnamon applesauce, she knew it was the peanut flour almost immediately.  The nurses couldn't confirm, but it didn't matter.  She successfully finished the first challenge having consumed the equivalent of 16 and 2/3rd's peanuts.  Several hours later after sitting through the observation period and finishing the required oat flour challenge, we moved on to the real stuff.  She ate 2 tablespoons of peanut butter.  Can you guess how many peanuts are in 2 tablespoons of peanut butter?  Approximately 33 and 1/3rd!  Amazing! Per a suggestion from the nurse, we made a party of it.  I brought leftover party plates, napkins, a few party hats and the bag of ingredients for our peanut butter treats.  Her doctor and nurses joined us, and we all sat around the kiddie table and ate peanut butter together.  She was nervous, but excited for the treat. 

Here we are almost ready to start the party.

Abigail at the start of the clinical trial.
What an incredible day and an incredible journey.  It's been three years and three months.  I reminisced this morning that she was just about to finish up Kindergarten when we started in May of 2009. Now, no longer a little girl, she's going to start 4th grade in a couple of weeks.  This year though, in a completely different manner.

Abigail on the last day of the trial.
While she'll have an Epi Pen in the nurse's office, there is no longer a need to have one in the classroom.  She can sit beside anybody in the cafeteria.  There's no need to wipe down her spot with a wipe and inspect neighboring lunchboxes.  I won't need to request that special snacks be served at her class parties.  There will be no meeting with her teacher prior to school starting to discuss her allergy, no printing out allergy action plans for her classroom, book and medicine bags or reviewing safety precautions with her bus driver.  Our only allergy requirement for the start of this school year is the completion of the medical authorization/release forms that stay on file with the nurse.

And tomorrow...she eats peanuts.  A peanut and a 1/2 on a regular basis will protect her.  The nurse's advise this afternoon was to relax and just have her eat some peanut products.  Honestly, I don't think I'm going to have any trouble doing just that!  We are so excited about the life changes that are about to come our way.  It's hard to believe that we've been blessed in such a manner.

Sunday, August 5, 2012

We have a winner!

Abigail's second challenge is on Tuesday.  We leave tomorrow to once again stay with my parents so that mom can watch my youngest.  It also considerably shortens our drive to Chapel Hill.

We're ready.  I've spent some time coming up with food ideas for the peanut butter portion of the challenge.  If she passes the peanut flour challenge, she'll have to eat 2 tablespoons of peanut butter.

I first made a cookie using a no-bake chocolate cookie recipe.   The peanut butter can't be heated (it changes the protein molecules) so the recipe was ideal.  I used sunflower butter and put a whole tablespoon in one cookie.  Abigail liked it, but it was going to be too sweet for her sensitive stomach.  She only finished half the cookie.  There was no way she was going to be able to eat two.  On to the next idea.

At Christmas, I make a treat that she loves.  It's Crispix cereal (or store brand equivalent) coated in chocolate, sunflower butter and powdered sugar.  Deconstructing the recipe, I pulled out the Trader Joe's equivalent of Ritz crackers, spread 1/2 tablespoon of sunflower butter on it, added some miniature chocolate chips and sprinkled powder sugar on top.  She loved it.  Asked for another, and then another.  My son and I had to try too.  Yum!  Tastes just like the sweet treat I make at Christmas.  We have a winner!!

I've packed it all up along with some cute plates and napkins for our peanut party on Tuesday afternoon.  The applesauce and cinnamon is also packed.  She'll need that for the peanut flour portion of the challenge.  The lab will mix the minimum amount of applesauce required for the oat and peanut flour dosages.  Abigail will have the ability to add more applesauce and/or cinnamon to taste.  Given her personality and need for control, this will be a tremendous help during the challenge.

Abigail is still nervous.  She's worried about her stomach hurting again.  She did conclude that not eating enough that day didn't help.  It's a special occasion so we'll swing by McDonald's on the way there and grab breakfast.  She's excited about that.  She started the last challenge with a fairly empty stomach because she was too nervous to eat.  This time, she realizes how important it is to have food on her stomach.

Wish us luck!  Regardless of the outcome, she no longer has to do the drops.  If she passes, then peanut allergy we are!  If she can't eat the equivalent of 16 peanuts after being off the drops for a month, but comes close, then she'll add a peanut and a half to her diet on a daily basis in lieu of the drops.  Even if that's the case, I'm thinking there is no longer any worry about cross-contamination.  How awesome is that???  I'm so excited!

I'll keep you posted.  Be praying for us.