Saturday, February 16, 2013

Hasn't Been Easy!

The last six months haven't been easy ones.  I know a lot of people would say, "but your daughter is no longer allergic to peanuts!  How can you still not be celebrating?"  And, it's true.  Our family has definitely enjoyed the benefits of no longer being worried about what Abigail eats.  There's another side to the picture though.  She doesn't like peanuts!

While she doesn't make a gigantic scene every time I put something peanut in front of her, she does protest.  So far, we've been most successful with peanut butter cups from Trader Joe's and honey roasted peanuts.  She doesn't really enjoy the honey roasted peanuts, so they are treated more like a bitter pill that has to be taken.
I had every intention of posting about her going back to school without the allergy.  Quite a change for us. Halloween was interesting too.  I also had all intentions of posting pictures of her eating peanut-based candy bars for the first time.  She tried a miniature Snickers and then promptly removed them from her bag.  She tried a Butterfinger, and did the same thing.  Peanut M&M's were a little easier for her to eat, but she'd rather have the plain ones.  What she did enjoy was the ability to eat the other items that were manufactured in the same facility or on the same equipment.  They didn't contain actual peanuts, and were no longer a risk!

We did have more success last night with Girl Scout Cookies.  Yes, it's that time of year again.  As Cookie Mom, we've had more cookies in our garage than room for my car!  Last night, she tried a Tagalong for the first time ever!  She ate it and said she liked it.  The test will be if she asks for another one today.  It was the first one I've had in 9 years too.  I couldn't really enjoy it though because of the ingredient list.  My husband declined one altogether, but my 5 year old son ate one...his first too!  I think he's benefited just as much as Abigail.  He loves peanut products and until last year, had only known sunflower butter products.

Our allergy concerns may have subsided, but they were replaced with others.  This last year, we've spent considerable time and effort dealing with the other "A" disorders....ADHD and Anxiety.  They've been a major factor in why I haven't been posting.  My focus has changed.  That, and Abigail is now 10, and I feel like I should respect her privacy regarding these issues.  Which leaves me at an impasse.  Where do I go from here?

I don't know that answer right now.  I keep getting new visitors, followers and comments.  I get e-mails from you guys that I've been awful in responding to in a timely manner.  I've gotten request to try and review peanut-free products.  I've been so busy addressing day-to-day life that I've gotten side-tracked in addressing this blog.  And, in truth, we've succeeded in beating this allergy.  While we'll never put it behind us (it's shaped who we all are), we have put it aside for the time being.  There are other pressing issues.

I love you guys and I love this blog for the outlet it gave me to help deal with her life-threatening allergy.  It was empowering and therapeutic.  Will I post again?  I'm planning on keeping you guys updated on our trips to UNC.  We may be officially done with the study, but unofficially, they will still keep tabs on Abigail.  Thank goodness!  Right now, though, my focus is on healthy eating and working with my child to overcome her inability to stay on task and to deal with her anxieties.

I've been praying on the next steps.  I just have to wait and see where God leads me.  Blessings to all!

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.

Saturday, July 28, 2012

Excuses and Details

It's almost time to go back for our final challenge, and I haven't even posted the details of our last.  What's been keeping me busy??  It's summer, the kids are out of school (that's reason enough), but I also buy and resell children's items on eBay.  We've been in this house less than a year so there's lots of DIY projects (I'm now addicted to Pinterest), and my garden is in full production.  Over this last spring and summer, my garden has gone from this:

To this:

To that:

And "that" has taken a ton of time. I've made zucchini bread, muffins and cookies, canned pickles, dried and frozen tomatoes, tried plenty of new recipes, and still have a fridge full of fruits and vegetables. But enough about what's been keeping me busy.

The food challenge...

It was our first time going to UNC Chapel Hill.  Wow, it's a huge hospital system.

The Food Allergy Study Center is tucked away in a medical office building across from the hospital.  We barely found it.  We happened upon the sign and realized we had arrived at our destination.

The nurses immediately put numbing cream on her arms for the IV and started the skin prick test.  I was somewhat surprised that after not having noteworthy skin reactions at our last test (a year ago), that she had fairly large whelps.  They didn't itch as bad though.  In the past, we've had to fan Abigail's back while we waited the 15 minutes.  This time, she didn't complain at all.  She said they itched, but were okay.  Might just be maturity, and there was no room for speculation.

They inserted her IV, and didn't waste any time getting started with the doses.

Abigail chose to have her flour mixed with applesauce for one challenge and chocolate pudding for the other.  She got the applesauce blend first.  She commented early on that it tasted good.  I knew then that it wasn't the peanut flour, but didn't say anything.  We were pleasantly surprised to find that each challenge would be done with just 6 doses.  It just meant that that little cup shown in the picture above would soon turn into a larger bowl.  There was a waiting period between each dose, and they listened to her chest and checked her skin in various places before giving her the next dose.

We finished the first challenge by 11:30 and then had to wait an hour before starting the second.  We had internet access, so Abigail spent her day on my laptop.  With headphones on, she more or less tuned out the whole process.

She didn't say anything, but I knew she didn't like the chocolate pudding flour mix.  By the third dose, it was apparent that she was going to struggle to finish it.  The peanut flour (no doubting now) was thick and chunky, and the chocolate pudding was too sweet for an anxious stomach.  She was eating chips and drinking lots of water between each bite.  Luckily, there was a jar of applesauce in the fridge and Plan B was immediately implemented.  We weren't going to fail this challenge because of some chocolate pudding.  She took Dose 4 with the applesauce and was able to eat it all without issue.  Did the same for Dose 5.  By this time, she was doing some sniffing and sneezing.  They were monitoring her, and she could still breathe in a deep breath in both nostrils so onto the final dose.  She ate it all.  We now had to hang out for 2 hours and see what happened.  She got to open the sealed envelope to reveal her dosing order.  No surprise that the peanut flour was second.

She continued to do some sneezing and sniffing.  Her stomach was cramping a bit.  We walked around, went outside for a change of scenery, and her symptoms never worsened.  For the books, it was a pass!  She ate the equivalent of 16 and 2/3rds peanuts.  She wasn't without symptoms.  The nasal congestion did subside by the time we were heading home around 3:30.  The stomachache and cramping lasted all afternoon, and she went to bed very tired and still complaining of stomach pain.  I'm sure it had to do with eating all of that oat and peanut flour, but also with being very anxious, not eating a good breakfast (too anxious to eat more than a bowl of cereal), and having minimal lunch at the clinic.  But, she passed!!!  If a runny nose and a stomachache is all she'll have to deal with in the future after eating that many peanuts...well, we can live with that!

We're just a little over a week away from going back again.  We left without drops.  She's had no peanut protein since that challenge.  I've been thinking of ways to ease that stomachache...a bigger breakfast, cinnamon applesauce for the entire challenge, etc.  I can't control her anxious stomach.  She's even more nervous about this challenge because of that last stomachache.   If she passes this next challenge, they're going to have a "peanut party" and all of us will eat peanut butter together.  She'll need to eat 2 tablespoons.  I've got to bring food that will make that task easier.  She's thinking we top it with mini marshmallows, chocolate chips and Rice Krispy cereal.  That makes my stomach hurt just thinking about eating that.

I'm really praying that she does the peanut flour first at the next challenge.  I'm concerned about her being able to eat both the equivalent of 16 plus peanuts and 2 tablespoons of peanut butter.  If there is a longer break in between, it might be possible.  Also, I wish I could figure out a way to ease her anxiety going into the challenge.  That would take away a great deal of the stomachache concerns.

Regardless, I'm still amazed at how far we've come in the last three years, and how truly blessed we are.

Thursday, July 12, 2012

Haircut & Drops

I know I still need to post the details of Abigail's challenge, but I didn't want two important events to pass by without sharing.  Monday morning before leaving to go out of town, Abigail had 8 inches cut from her hair to use in making real hair wigs for cancer patients.  It wasn't her first time donating hair to Pantene Beautiful Lengths, but still no easier than the last.  It was a lot of hair, and she'd been growing it for the last 2 years. 

The shorter length looks super cute on her, but the new haircut along with her new glasses makes her look so much older.  Where did my little girl go?

The second noteworthy event was that Monday night was potentially her last time ever doing the peanut protein drops.  I couldn't let that event pass by without a comment and a picture.

She hasn't done drops since Monday night.  It feels weird for her to not be doing them.  We started the peanut clinical trial in May of 2009.  That's 1000 plus days of doing drops!  That's a really long time.

Tuesday, July 10, 2012

She Did It!!

The equivalent of 16 and 2/3rd's peanuts, and she ate it all!  We're so excited!  The challenge was a success.  I'll post details and pictures tomorrow.  I'm too tired right now, but did want to let everyone know that it's over, we're back at my parents and ready for a relaxing evening.

Thanks for your continued prayers and support.