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!

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!!

Another successful cake baked!

This last weekend was my husband's birthday. I asked him what type of cake he would like, and he mentioned a German Chocolate cake. My immediate response was no way...pick again. His second choice was a coconut cake. That was a little better.

If you've been following my blog, you know that I'm a "from scratch" baker when it comes to fancy desserts. It's really one of the only ways to bake when you are trying to avoid processed foods and have to cook for a peanut allergy.

After doing some recipe research online, and remembering that I had successfully pulled off the chocolate marble cheesecake he requested last year, I re-considered the German Chocolate cake.  Especially since I found this great recipe that started with a boxed German Chocolate cake mix.  Yes, I was willing to "cheat" just a little, especially this time of year when I'm on over-load.  Well, the problem was, that I couldn't find a German Chocolate cake mix that I was willing to purchase given the list of ingredients.  I did find a Dr. Oetker** organic vanilla cake mix, and after comparing the ingredients thought I'd take a chance.  I also purchased Baker's German Sweet Chocolate bar (unfortunately, no other organic or peanut risk free option in site) to turn my vanilla cake to chocolate.

I mixed the box mix with the buttermilk, oil & eggs per the recipe I found on Barbara Bakes and then had to figure out how to add the chocolate.  The recipe that came with the chocolate instructed to melt the chocolate in the microwave with 1/2 cup of water.  No sooner did I do that when I realized that I just added an extra 1/2 cup of liquid to the recipe.  Already committed, I poured very thin cake batter into my pans and held my breath as I watched my cake layers in the oven through the glass. The cake layers turned out beautifully, but how would they taste?

I did use pecans in the frosting.  Abigail does not have a tree nut allergy, but given the high risk of cross-contamination, the peanut clinical trial guidelines require that tree nuts be removed from the participants diet.  My parents have several large pecan trees in their backyard.  We've talked to our doctor at Duke, and because there is no risk of cross-contamination, Abigail is allowed to eat pecans from their trees.

Here's how the cake turned out.

And how did it taste?  Incredible.  It's the most moist chocolate cake I've had in a really long time!  Yeah, another successful cake baked!  Happy Birthday to my wonderful husband!

**Just a note about the Dr. Oetker cake mix.  There was no allergen cautionary label on the box, and I haven't been able to find any information on their website.  In hindsight, I shouldn't have allowed Abigail to eat a piece until I knew for certain. It's a Canadian company, and they're usually really good about labeling. I'll contact them and find out.

Changes at Duke

I must admit, I'm anxious. Dr. Burks has accepted the position of Chair of UNC Department of Pediatrics, Physician-in-Chief of N.C. Children's Hospital and is leaving Duke University Hospital.

We received an e-mail from our doctor in charge of the Peanut Sublingual Clinical Trial assuring us that, for the time being, it was business as usual. We can expect to see changes. The trials are to move to UNC sometime next spring. So, yes, I'm anxious.

Abigail's next appointment is in January for blood work. I assume we'll drive to Durham. Her big food challenge to see if she can tolerate up to 15 peanuts is scheduled for June. That should take place in Chapel Hill. I don't mind the change in location, I just want re-assurance that there are no changes planned for the studies.

Here is the article announcing his new position.

More Good News...

I've got more good news to share, but first an apology. It's been ages since I last posted. Life right now is spinning precariously close to out of control. We're house hunting in a area about 50 minutes from where we currently live. It's not a familiar area so I'm spending hours researching homes, neighborhoods, schools, churches, etc. It's a big move for us taking us away from a community that we've lived in for the last 14 years. Keeping up with the latest news in the food allergy world has taken a back seat to finding a house that our family can call home.

Now, for the good news, and it's not that we've found a home. Hopefully, that will come soon. The good news, no, make that great news, is that I've just received Abigail's latest IgE numbers. It's down another 2 1/2 points to 6.6!! Her baseline number (number she started the peanut sublingual trial with) was 10.4. After 4 months of taking the daily peanut protein drops, it peaked to 16.7. At the one year mark, it had dropped to 12.9. In January of this year it was 9.28, and in June, 6.6. We're heading in the right direction. She's got another year to go, and I'm feeling confident we can get there!

Abigail Likes It!

For the first time ever, Abigail ate a sunflower butter sandwich for lunch.  Now, to most families, that wouldn't be any big deal.  But, in our family, for a child that, up until a day ago when asked if she wanted to try sunflower butter would make a disgusted face, it's significant.

We've used sunflower butter for years (at least since Abigail was 18 months old) as an alternative to peanut butter.  My husband and son eat it almost on a daily basis.  Over the years, I would ask Abigail if she wanted to try it.  Occasionally she would, and each time, same results.  That disgusted face.  Now, I should admit, that she does like the Sun Cups, but they're covered in chocolate.  Yesterday, at snack, she asked to try a cracker dipped in the sunflower butter.  She's never asked before.  She ate several.  Today at lunch she asked again if she could have some and then ended up spreading it on bread and making a sandwich.  She even asked to lick the knife.  I was amazed.

I believe that your body has innate self-defense mechanisms to keep it safe.  My fair-skinned, red-headed son, doesn't like being outside in the intense heat.  Abigail doesn't like the smell, texture or taste of the sunflower butter which is quite similar to peanut butter.  Self-defense mechanisms to protect themselves?  I'm purely speculating here, but what if through this densitization process with the peanut clinical trial, she's losing that self-defense mechanism?  Just maybe.  Or, maybe just wishful thinking.

It's Been Another 6 Months

I can't believe it's already been 6 months since Abigail's last appointment for the Peanut Sublingual Immunotherapy Clinical Trial. It was time for another trip to Durham, NC, and the Duke University Hospital. This particular visit marks our two year anniversary in the program. Just 365 more days of daily drops, one more 6 month blood work appointment, two more food challenges and we're done. Unofficially anyway. There will still be follow-up visits to monitor her desensitization.

Another visit down!

You can tell from this picture that Abigail is just thrilled to be back. Upon our arrival, we were just a little confused. "Clinical Trial Research Unit" was no longer labeled on the front doors. At first we wondered, if in the last six months, they had moved the unit to a different part of the hospital. This small sign was all there was to announce that yes we were still in the right spot. They now share this hall with another cancer unit and it got top billing on the big double entrance doors.

This visit, like the rest, started with weight/height measurements and the application of numbing cream on both her arms. She then had to spit in a tube (her least favorite part of the visit) and sit through a skin prick test.  This test is no longer as uncomfortable as it used to be.  The skin reactions are now minimal, and her back doesn't itch near as much.

Abigail's doctor marking where the skin will be pricked.

Final results.  Some swelling at highest dosage (on top left).
Minimal swelling at the remaining pricks.

Here is a link to pictures of Abigail's last two skin prick tests.  There have been visable changes each time.  She also had 6 vials of blood drawn and then it was time to say good-bye to Dr. Kim.  His Fellowship at Duke is over, and he has accepted a permanent job in Chapel Hill.  We'll miss seeing him on our visits.  He was fabulous with Abigail and extremely patient in answering all of my many questions.  There is already another doctor assigned to continue Phase I of the Peanut Immunotherapy Sublingual Trial.  We did not get to meet her at our appointment.  While we were having our visit, she was busy doing a food challenge with the very first patient in Phase II of this trial.  I'll follow up on details of that trial in a different post.

So, what's next?  Daily drops, a report on Abigail's IgE results from this visit and a 6 month lab appointment in January 2012.  Starting in December of this year, the first participants in our trial will be starting their end of study food challenges.  When we go back to Duke in January, we'll be updated on those results.  Then in June, Abigail will have her food challenge.  If she can tolerate it, she'll be given the equivalent of 20 peanuts.  Assuming there are no issues, and I'm not expecting any (she tolerated the full 10 peanuts at her food trial last year), we'll be asked to not give her the drops or any peanut product.  After 6 weeks, she'll be given a food challenge again to see if she can continue to tolerate the 20 peanuts.  If so, we'll then introduce small amounts of peanut into her diet and/or continue the drops.  That's yet to be determined.  And, just as important, if she tests negative again to tree nuts, I'll be able to again purchase products manufactured in facilities using tree nuts.  Even better, her doctor felt she'd be able to pick up a can of any type of tree nuts and just munch.

While a year seems so far away for Abigail, I look back at how quickly the last 2 years have flown by, and how much progress she's made.  I'm looking forward to the conclusion of the study.  What will I blog about then?

Peanut Clinical Trial & Heathy Eating...Why I Blog About Both!

In my last post, I shared a Top 10 list of reasons why GMO food should be labeled.  Bottom line...so that we, the consumer, can make educated decisions on the type of foods we want to purchase to feed our families. I hope you all have had a chance to read through the list. I've been blogging for months now about the hazards of eating GMO foods, and if I haven't been convincing enough, hopefully that last post helped tip the scales in my favor.

It also helps explain why I continue to mix subjects in my blog. I've often wondered if I should have separate blogs. One for healthy eating/living and another for our journey in the peanut clinical trial. However, when I come across the link between the two, for instance:

There’s already plenty of evidence that the Bt-toxin produced in GM corn and cotton plants is toxic to humans and mammals and triggers immune system responses. The fact that it flows through our blood supply, and that is passes through the placenta into fetuses, may help explain the rise in many disorders in the US since Bt crop varieties were first introduced in 1996.

In government-sponsored research in Italy, mice fed Monsanto’s Bt corn showed a wide range of immune responses. Their elevated IgE and IgG antibodies, for example, are typically associated with allergies and infections. The mice had an increase in cytokines, which are associated with “allergic and inflammatory responses.” The specific cytokines (interleukins) that were elevated are also higher in humans who suffer from a wide range of disorders, from arthritis and inflammatory bowel disease, to MS and cancer.

Or this:

The young mice in the study also had elevated T cells (gamma delta), which are increased in people with asthma, and in children with food allergies, juvenile arthritis, and connective tissue diseases. The Bt corn that was fed to these mice, MON 810, produced the same Bt-toxin that was found in the blood of women and fetuses.

When rats were fed another of Monsanto’s Bt corn varieties called MON 863, their immune systems were also activated, showing higher numbers of basophils, lymphocytes, and white blood cells. These can indicate possible allergies, infections, toxins, and various disease states including cancer. There were also signs of toxicity in the liver and kidneys.

I think that I'm on the right track in keeping you guys up to date with what's going on in the world of food allergies and how the food we eat might very well be the root cause of those food allergies.

By the way, I took both of those excerpts from this article, Dangerous Toxins from Genetically Modified Plants Found in Women and Fetuses, written by Jeffrey Smith and published on the Institute of Responsible Technology website.  There's a lot of good information in the article, and I encourage you to read it in it's entirety.  In the meantime, I'll continue to research and report on both.

Peppermint

We can't seem to put Abigail's chronic stomach aches behind us.  Last summer I took her to see a pediatric gastroenterologist and through history and blood work, he ruled out a ton of potential culprits, Lupus, Crones, Celiac to name a few.  We opted not to do an invasive endoscopy because the blood work didn't indicate a need.  We left with a diagnosis of Functional Abdominal Pain and a prescription for Zantac.  We had already tried the stronger Prilosec without much benefit, and it was not something I wanted her to continue to take anyway.  The Zantac helps with the occasional bought of reflux.

Later in the fall, I took Abigail to see a Mind/Body Therapist who specialized in treating children who have chronic pains.  She worked with Abigail for a couple of months teaching her how to use breathing and visualization techniques.  That had some benefits and the stomach pain stopped occurring on a daily basis.

I'd like to say that she no longer suffers from stomach aches, but that's not the case.  They seemed to wain this last winter, but now she's complaining about them more frequently.  She has also been experiencing heartburn/acid reflux more frequently and most of the time Zantac or children's Tums takes care of it.  But other times, her stomach just hurts for no apparent reason.  I ask, and she'll say that she's not nervous or anxious about anything, although sometimes, I can attribute her stomach pains to a particularly stressful week.  By chance though, I did find something that provides some comfort.  Peppermint.

Whether it really helps physically I don't know.  It could very well just be a mental thing.  According to the University of Maryland Medical Center website though, "because it has a calming and numbing effect, it has been used to treat headaches, skin irritations, anxiety associated with depression, nausea, diarrhea, menstrual cramps, and flatulence."  The site also reports that a number of studies support the use of peppermint for indigestion and irritable bowel syndrome.

I'm a big tea drinker.  I start with hot green tea in the morning, usually have iced black tea in the afternoon, and a lot of evenings drink hot peppermint tea before bed.  While I was tea shopping for myself, I came across Just for Kids Organic Tummy Comfort by Traditional Medicinals.  It's safe for kids with mild herbs in child appropriate amounts.  Abigail doesn't drink it too often, but I like having it available in the pantry.  I usually make it and then ice it down.

Seeing how she enjoyed the peppermint tea and was always asking to have one of my Newman's Own Organic Wintergreen mints, I wanted to find a special tin of mints just for her that was pure peppermint.  My local health store stocks VerMints.  These were a wonderful find.  They're nut free, GMO free and gluten free...and they're all hers, making them extra special.

Neither the gastroenterologist, her pediatrician or her doctor at Duke believe that taking the peanut drops is causing Abigail's stomach aches.  I just know that she didn't complain of stomach pains until several weeks after starting the peanut clinical trial. I posted about my concern as long ago as March 2010.  We won't really know if the two are associated until we've finished the trial.  Maybe not even then.  She'll still have to continue eating peanuts to maintain her tolerance.  Another year though and she should be desensitized.  If by chance the two are linked, then these stomach aches should go away sometime between now and next June.  If not, I just don't know.

Single Digit IgE Number

In the craziness of moving, preparing for Easter and our trip to the beach (where I'm writing this post), I almost forgot to tell everyone about my latest call with Abigail's doctor at Duke.  Now that Abigail is on the maintenance dose, we only have to drive to the Duke Clinical Trial Unit every 6 months for lab work.  In between those visits, the doctor calls to check in to see how she is doing, and to see if there are any issues or concerns.  I had not heard her IgE lab results from our January trip to Durham so I was anxious to find out what her new numbers were.

Her IgE number is in the single digits!  That's incredible!  Our goal is to get her number to 2 by the end of the study.  We are on our way.  Her number is now 9.28.  With a year still to get there, I quote our doctor, "Abigail has a really good chance of kicking this thing."

Her IgE numbers are following the pattern that they are seeing with the other clinical trial participants.  When Abigail was 18 months old, her number was in the 14 range.  When she entered the study at age 7, her number was 10.4.  During the study, it spiked to 16.7, then down some to 15.5, then 12.9 and a year and a half into the study she's at 9.28.  One of the biggest conclusions the staff at Duke has made is that this process takes time.  They increased the sublingual immunotherapy study length by 6 months for a total of 36 months instead of the original 30.  They've found that the extra time is getting the numbers that they want to see.

While Abigail's IgE numbers were in the teens to start, Duke is still seeing the same trend with children that start with numbers in the 300's, 800's and even 1000's.  The number curve is still the same.  The numbers spike and then drop along the same curve.  I have a friend whose daughter's IgE number was in the 300 range, spiked up over 500, but is now in the 50 range.  It sounds like a long way to go to get to 2, but her percentage change is in line with Abigail's.  Her daughter is just seeing the drastic changes while Abigail's change of 2 to 2 1/2 points is equally a big deal.

Bottom line...it's working!  We are so blessed.  You guys hang in there too.  The latest trial that Duke is doing now is administering the peanut protein via a patch.  I really believe doctors are doing everything they can to make this process of desensitization as easy as possible to administer so that it can be done by allergist and doctors beyond those involved in the trials.

High School Freshman in Coma

A 14 year old, high school freshman girl is in a coma after going into anaphylactic shock. The coma is a result of delayed CPR and an extended period of time without oxygen flowing to her brain. There are plans later this week for her to undergo surgery so that a feeding tube can be inserted.

Apparently, she was hanging out with some friends after school and they were eating Kellogg's Crunchy Nut cereal for a snack. The words "peanut" or "nutty" appear about 20 times on the cereal box. She did know the severity of her allergy. There is no mention of an epinephrine pen anywhere in the article. Her dad mentions that Benadryl had worked on past minor allergic episodes to MSG and preservatives.  Here's the link if you'd like to read the full story and see the Fox News video clip interviewing the girls father.

I really don't know how to comment. It's a very tragic tale that brings up more questions than answers.  I can say this though.  It's a perfect example of one of the main reasons that my husband and I decided to pursue the peanut clinical trial at Duke, and why we're putting Abigail as well as our family through repeated 290 mile round trips to the Duke Clinical Research Unit, multiple blood and skin tests and a daily regiment of drops for 3 years.  We were very concerned of what would happen when our very strong-willed, opinionated daughter reached the pre-teen and teenage years and was no longer under the constant supervision of either ourselves or another adult.  My husband agrees.  Ironically, when I told him about this girl in Phoenix and the tragedy, his first comment was, "that's why we are in the clinical trial."  What a blessing this trial is for our family, and we pray that the results bless many in return.

A mom wrote on a food allergy message board that she trains all of her teenage daughter's close friends on the signs of an allergic reaction and the administration of an EpiPen.  Prior to letting her daughter go anywhere with her friends, she makes sure that they are all aware of where the EpiPen is and asks that they make sure it doesn't get left behind in the car.  What a great tip.

In the meantime, we need to keep this young girl and her family in our prayers.  I can't imagine what they must be going through or how much they are suffering.

Latest Trip to Duke

It's been three months since our last trip to Duke University Hospital.  It was time to hit the road and make the drive to Durham to visit the Duke Clinical Research Unit.

It was a lab visit.  These occur every 6 months.  I think Abigail dreads the saliva collection more than the blood draw.  She dislikes spitting into that collection tube.  She also had another skin prick test.  The last one was done at Abigail's food challenge back in June of last year.  Here's a picture from that test.

 

Here's a picture of her back after the test this week.  The top prick on the left is the highest dose of the peanut protein.  The prick on the bottom right is the histamine.  That first prick is about the same size as the one in June 2010.  The second prick was about the size of a pin head.  Her doctor traced it, but didn't record the others.  There was nothing to trace.  You can definitely see the difference between these tests.  How exciting! 

Last, but not least, they had to do a blood draw to get new IgE numbers.  I know they do a regular blood panel to monitor her overall health, but I'm not sure what else they look at.  Regardless, there were 5, maybe 6 tubes they needed to fill.  Do you know what Abigail did?  The nurse inserted the needle, but Abigail put on and removed each of the tubes.  It was unbelievable.  Here's a picture of her changing out the tube.

Six months ago, Abigail's IgE number was 12.8.  The doctor thinks that this time around we might possibly see a single digit number on the lab report.  I can't wait to get those results!

There was also opportunity to ask lots of questions about what's next for us in the trial as well as get an update on the results to date of the sublingual immunotherapy study. I'll cover all of that in my next post.

A New Year's Thank You!

I hope everyone has enjoyed these last days of December and the many holiday events that fill the calendar this time of year.  I also hope that everyone has stayed safe and healthy.  Is it too much to also hope that everyone spent the holidays stress free and not in the least bit worried about the safety of their peanut allergic child?

I must admit that due to our participation in the peanut clinical trial at Duke, my worries have been a lot less than in previous years.  Knowing that Abigail is on the actual peanut protein drops and that she flew through the food challenge like a champ alleviates a great deal of the worry.  I was still diligent in checking ingredients, I still packed a few safe party food alternatives for those family gatherings, I still volunteered for her class Christmas party and even made sure I was the one signed up to bring the sugar cookies to decorate and I still had to comfort the disappointment when a few really scrumptious looking desserts had to be passed up on because of ingredients that might be subject to cross-contamination.  But, the worry of who was eating what where wasn't always in the back of my mind, and there were no hurt feelings when a hostess hadn't taken her allergy into consideration.

So, here on the last day of the year 2010, I wanted to take a minute and thank everyone at the Duke Clinical Research Unit that have made it possible for us to be on this journey.  Our family is so very grateful for this opportunity.  I also wanted to thank our family and friends that have supported us with many prayers, hours of childcare for our 3 year old and their overall interest in Abigail's progress.  Lastly, I wanted to thank you, my wonderful readers, that have been so generous in your comments, well wishes, blessings and e-mails.  I can't possibly explain how much this blog and your interest means to me.

Many Blessings for a Safe and Happy 2011,
Melanie
a.k.a. Mom with a Mission