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.

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.

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 free...here 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.

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.

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.

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.

Melanie

Tomorrow

Tomorrow is the big day!  It's food challenge time.  Time to see if Abigail's body is ready to stop the peanut protein drops and start getting the real thing.

We're heading out after lunch today to go to my parent's house which is just 30 minutes from Chapel Hill.  Given that Abigail and I need to be at the hospital tomorrow at 8:00 am, their house is very conveniently located.  It's also nice that they can keep my 5 year old.  The day is going to be long enough as is.

The challenge is blinded and Abigail will have to consume both peanut flour and oat flour.  She'll know quickly what she's eating.  It's pretty hard to disguise the taste of peanut flour.  We're praying that the lab sends the peanut flour first.  There's an hour between challenges usually coinciding with lunch time.  If she has the peanut flour first thing in the morning, we can leave as soon as she finishes the oat challenge in the afternoon, around 3:30.  If she gets the oat flour first, then we have to wait two hours for evaluation after she finishes the peanut challenge in the afternoon meaning we're there till at least 5:30.

As soon as we get there tomorrow, they'll put numbing cream on Abigail's arm so they can insert an IV.  After the IV is inserted and all safety precautions are in place, they'll begin giving her applesauce mixed with doses of flour at timed intervals working up to the highest amount.  A nice perk is that our doctor from earlier visits to Duke plus the two nurses that have been there from the very beginning will be at UNC to oversee every step of the challenge. So, with lot's of familiar faces and a big bag of activities, hopefully it will be a fairly easy day (if one can refer to this process as easy). During the day, they'll also draw blood for labs and do some tree nut skin test.  She's tested negative to tree nuts in the past on her blood test, but given that she's never consumed raw nuts, she also needs to be skin tested.  They'll test for just 2 to 3 tree nut at this visit and do 2 to 3 more at our next visits.

And, what happens after tomorrow?  If it's a success, she'll stop the drops, stay on her restricted peanut-free diet, and then head back to UNC for a second food challenge in August.  That one will be a repeat of tomorrow except at the end, if she passes, she'll have to consume the equivalent of 2 tablespoons of peanut butter.   If tomorrow Abigail doesn't make it past all doses of peanut flour (the equivalent of 16 to 17 peanuts)....well, we'll address that then.

As for today, we're asking for prayers for a safe trip, peace for Abigail during the challenge (she's super nervous) and that God continue blessing this trial, not just for Abigail and our family, but for the many children and families whose lives can be changed as an outcome of this journey.

I'll keep you posted.  Thanks for all of your continued support!

Roller Coaster Ride, a.k.a., Peanut Clinical Trial

It's been quite an emotional roller coaster ride this spring.  At our last visit to Duke in January, we discussed the details of Abigail's pending peanut food challenge.  At that time, we were all set for this summer.  In March, we received an e-mail from our doctor stating that the protocol had changed.  They've decided to extend the study from 3 years to 5 years.  My heart sank.

Earlier in the year, they selected 10 participants, those that have been in the study for 3 years, and who had passed their original food challenge at the year mark, to do the 3 year challenge.  This challenge consists of eating the equivalent of 16 - 17 peanuts.  Less than half of those 10 passed the desensitization challenge and were able to go onto the tolerance challenge.  The thinking is that SLIT (Sublingual Immunotherapy Treatment) takes longer, much like traditional allergy shots, and the additional 2 years will allow for more changes in the immune system.

At this point in the e-mail, I'm almost in panic mode.  We've been saying to Abigail for months now, "You're almost there.", "You can do this.", "It's countdown time." and "You can make it till July."  Obviously, we're operating on the thought that she's going to pass her challenge.  Now, I'm not so sure, and what I'm going to tell her?

I was relieved to read further in the e-mail that there is a provision in the study protocol that allows for a food challenge sooner than 5 years if the IgE is 15 or less and the skin test is 5mm or less.  Whew!!!  Those numbers were based on their experience with the peanut flour studies, and the fact that the kids from the SLIT group of 10 who did pass both food challenges had lower IgE numbers.  Abigail's number was 7.54, and her skin prick test was almost non-existent.  We're back on for July!!

Fast forward to May.  I call the now transferred staff at UNC Chapel Hill to see about scheduling her food challenge in July.  In talking with the nurse that's been there from day one and more or less coordinates all of the peanut clinical trials, I find out that they are re-thinking the 3 year challenge provision.  There goes the heart sink again.  She explained that the additional 2 years may mean the difference between being desensitized and being tolerant.  Obviously, as disappointed as we may be, we choose the cure over the band-aid.  On that call, I did find out that we could skin test for tree nuts, and if the test backs up Abigail's negative blood test results, we could introduce tree nuts.  That's a big deal, and helped ease the blow of potentially staying on the SLIT drops for another 2 years.  We'd know for sure after the staff met and made a final decision.

I got a call last week.  We're back on!  Told you it was a roller coaster ride.  Here's how it will work.  At the 36 month mark which we've actually passed (it was mid-May, but over the years, we've pushed our annual visits to June to get past end-of-school commitments), Abigail will do the desensitization challenge.  Looks like this year it'll actually be July due to summer camp and their schedule.  On challenge day, she'll consume doses of peanut flour up to the equivalent of 16 to 17 peanuts.  If she can finish the challenge, then she's considered desensitized.  We go home, and stop the drops for a period of 1 month.  In August, we go back for her tolerance challenge which is the same dosages up to 16+ peanuts.  If she doesn't tolerate the full amount, they look at the dose where she started showing symptoms and step back one.  That amount will be her tolerance level.

We're excited and scared at the same time.  I'm praying that she passes both challenges with no issues.  Having her be tolerant to peanuts would be so much more than what we were asking for when we started this trial.  My hope then was that she could consume products processed in a facility that manufacturers peanuts, and that I would no longer have to worry about accidental exposure.  Being in a position where she needs to eat peanuts would be amazing!

Let's hope there are no more changes!

Easter Experiment

Before Easter gets too far behind us, I wanted to write about an Easter experiment that we conducted this year.

In keeping with our dietary habit of avoiding artificial colors because of their link to allergic reactions and ADHD, I decided it would be fun to try to dye our eggs naturally.  It's something that I've wanted to do for years.  In fact I posted about it way back in 2010, but never made it a reality.

Because we weren't going to have a table full of rainbow colored cups, I tried to still keep it fun for my 9 and 4 1/2 year old by turning it into a science experiment.  I had found an article in Natural Awakenings that recommended we add natural ingredients when boiling the eggs.  Using their suggested foods/ingredients, we pulled out every pot in the house, added water, the ingredients and vinegar and commenced boiling.  Know that saying that a watched pot never boils?  Well, it's true.

It's Easter Sunday afternoon, and instead of enjoying a relaxing activity with my family, I find myself slaving over a hot stove...all by myself.  Some would call that a failed experiment and stop there.  Still needing hard-boiled eggs for breakfast the next morning, and being somewhat curious, I (notice the singular tense) completed the experiment.  I could call it a success in that the eggs were cooked, some had color and we weren't promoting the use of artificial colors.  Just as easy, I could call it a failure, and for obvious reasons.

In order from left to right, we used frozen blueberries for blue/purple, frozen spinach for green, cherry juice for red, paprika for orange and turmeric for yellow.  I'm not giving up though.  The yellow eggs were gorgeous, and with the right ingredients and amount, this could be a viable option.  The eggs absorbed the nutrients from the spinach, blueberries and cherry juices making that a bonus, and all of the water and ingredients used to boil the eggs got used to water the outside plants.  So, maybe not a complete failed experiment.

A Duke visit update...finally!

So much for "I'm still here!"  I had intended to then pick up where I left off and keep the posts coming.  Life kept giving me more pressing issues to contend with including getting both of my children settled in new schools, our family accumulated to a new community and my desire to start addressing the "to do" list associated with a new house.  I'm quickly realizing that the list never ends and only gets added to.  Now, it's also the start of the summer gardening season, and I have a blank slate that needs to be shaped into a thriving garden.  So, if I'm going to keep posting, I have to just figure out where to carve some time and sit down and do it!

Having not updated anyone regarding our last visit to Duke (in January), that's the obvious place to start.  Unfortunately, the trip didn't provide a ton of writing material.  We drove almost 3 hours there, stayed for 30 minutes and then made the long trip home.  Abigail had to sit through a blood draw, but like other visits, she was a real trooper and did so without complaint.  Time has equaled experience and knowledge and study protocols have been amended including the amount of blood drawn.  The nurse took just 2 vials versus the 6 to 7 of previous visits.  They've also amended the frequency of skin prick tests to just once a year.  Abigail's last skin prick test was 6 months ago, so she was off the hook at this visit. The rest of the appointment was spent discussing the upcoming trial move to Chapel Hill and the food challenge marking the conclusion of our 3 year participation in the clinical trial.

At the time of our visit, they had already had 3 other children complete that challenge and consume the full amount of 5 grams of peanut flour, the equivalent of 16 to 17 peanuts. The kids had also eaten actual peanuts in the hospital setting just to make sure they could safely be dismissed to go home and eat more.  I'm getting excited all over again just sitting here typing.  Abigail breezed through her first challenge eating all 2.5 grams without incident.  Since then her IgE number has steadily declined.  I'm very hopeful that she will complete this final challenge as easily as she did the first.

Abigail will most likely do her food challenge in July, and this time we'll be driving to Chapel Hill.  The staff is currently wrapping up the move from Duke University Hospital to UNC.  Like the last challenge, it will be double-blinded.  She'll have to do two.  One with an oat flour and another with the peanut flour.  We won't know which one will be first.  Only the lab tech who mixes the flour in the food of choice, most often applesauce, will know.  I say that, but it won't take long to figure it out.  It's pretty hard to disguise the smell and taste of the peanut and Abigail will pick up on it fairly quickly.  If Abigail digests the full amount plus the real peanuts we'll joyously leave and take a month off from the drops and all peanut products.  We'll then go back a month later and do the food challenge again.  If at that time, she again passes with flying colors, we are free to go home and bring peanut products back into our house.  She'll be under no restrictions as to how much peanut products she can eat, but it's advised that she consume at least 1 1/2  to 2 peanuts daily in some form or fashion.  It's also advised that we continue to carry her Epi Pen.

There's more to write about the visit than I thought, and I'm not done.  I'm going to have to stop though and write a Part 2.  If I'm going to keep up with my posting, then I've got to make these short.  Right now, it's breakfast time and duty calls.  There have been changes made to the study protocol since our visit that I also want to cover.  I'll address those next time.

Thanks for everyone's continued support!  I hope I don't sound to blasse regarding the completion of the trial.  It's been three long years, and frankly, the entire family is ready to get on with our lives.  At the same time, we do realize how incredibly blessed we are to have this opportunity.  "Just a few more months" is quite frequently uttered around our house.  How incredibly exciting!!

I'm still here...promise!

Hope everyone had a great holiday season!

Just wanted to let everyone know that I'm still here and do have plans to post again soon!  Please be patient, and don't stop visiting!

By the way, we're heading to Duke again next week for our 6 month visit.  No skin prick test this time though.  They've changed the protocol to only 1 time per year as opposed to every 6 months.  Abigail does have to have blood drawn, but less than usual (another protocol change).  I'll definitely be posting about our visit.