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.

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.

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.

Preventing Food Allergies in Children

Last week, I wrote about a new study in England being conducted to determine if either eating peanuts or avoiding peanuts between birth and age 2 was more likely to result in a peanut allergy.  This week, information on a study in Australia was released reporting that avoiding the offending allergen from the 3rd trimester of pregnancy until the age of 2 resulted in less food allergies.

WebMD reported that 7 out of 10 babies born to mothers who to took care to avoid food allergens (based on older sibling allergies) had no food allergies versus 45% of babies born to mothers that did not follow precautionary advice.  The study leader, Velencia Soutter, MD, goes on to say that avoiding the allergen also means eliminating the offending food not only from the diet but also from the environment, in other words, clean house!

At this point in reading the study, I'm intrigued.  This is exactly what I did. I ate lots of peanut butter crackers when I was pregnant with Abigail and while breast-feeding.  My husband and I continued to eat peanut butter products while she was an infant.  At 18 months, I gave her peanut butter, and she had an allergic reaction.

Okay, I'll admit that we do keep a few snack bars, not containing peanuts, but manufactured in the same facility, on the top shelf of our pantry. But, that's really the extent of the peanut products that we've had in our house since we found out she was allergic.  I can also probably count on 2 hands the number of times I've eaten an offending product like a peanut butter candy bar.  So, I can say with much confidence that when pregnant with our second child, I did not consume any peanuts, nor when breast-feeding, nor when he was an infant.  In fact, he's 2 1/2 and still has not had any peanut products.  We've had a RAST test performed, and he shows no signs of being allergic to peanuts.

So, back to the study...
Dr. Soutter did the study because many moms were asking in desperation if there was anything they could do to prevent future children from having food allergies.  They advised 274 pregnant women in their 3rd trimester to avoid the foods that their children were allergic too, but did not require them to.  Of the 274 women, approximately 2/3rds followed their advise.  Their babies were then given skin prick tests at 1 1/2 and 3 years of age to test for the food allergies of their older siblings.

Here's the results:

14th Visit to Duke

We went to the Duke Clinical Research Unit yesterday.  It was our 14th trip, and our first visit of 2010.  We're in the maintenance phase so the purpose of our visit was not to get a dosage increase, but for our 3rd round of testing.  It was a short visit, but a full one. Abigail had a skin prick test, about 7 vials of blood drawn and a saliva sample taken.  All that warranted 3 escalator rides, 1 for each test, when we were done!

Let me start by saying that Abigail did absolutely fabulous!!  Not one complaint!  I did think it was cute when Abigail asked the nurse if she would only stick her once (last time it took 2 tries).  She also watched and even helped change out the vials.  I was very impressed and very proud.  I should also thank the nurses.  They're pros and their no nonsense approach really helps.

Abigail's skin prick test results were much worse than the time before.  I do remember being told to expect the results to get worse before they get better so I'm not sure why the results of her 2nd prick test were much better than the 1st or the 3rd.  I also had the opportunity to talk with our doctor about the food challenges.  They've done 10 so far.  He couldn't share specific results with me, but he did say that they were feeling good about what they were seeing.  He also told me that based on what they were seeing, there was no plan to make any modifications to the study protocol.

There were a couple of other eventful happenings at this visit.  I was able to meet another mom that I've been communicating with for several weeks.  Her daughter was at Duke for her very first visit.  She and I have been e-mailing back and forth discussing all aspects of the trial.  She's had lots of questions, and I was able to give her a good amount of information.  I'm hoping our discussions have been helpful as her family starts the journey to becoming peanut allergy free!

Another really cool part of our visit to Duke was that my mom came with us.  Abigail and I loved having her spend the morning with us.  After our appointment, we took Abigail to a birthday lunch at CiCi's Pizza and surprised her by having both my dad and sister meet us there.  By the way, none of CiCi's products contain peanuts, are made with peanut oil or processed in a plant with peanuts.

All in all, it was a great trip.  We don't have another appointment scheduled until the first of April when we go to discuss the details of our food challenge in May.  We've got a long way to go yet, but I'm overcome with how blessed we are to be a part of this trial.

Is it really a peanut allergy?

I'm deviating from my Healthy Change posts to write about a study that was just published regarding the "over-diagnosis" of peanut allergies.  Researchers in Manchester, England are claiming that a large percentage of people diagnosed with a peanut allergy may not be at risk at all.

You can read the whole article on WebMd, but here's the jist.  The University Hospital South Manchester fed 993 eight year old, peanut allergic children a special brownie spiked with a peanut protein.  They then gave these children a blood test, presumably a new one, that looks for a reaction to a specific part of the peanut which triggers a serious allergic reaction. The difference between their blood test and a normal skin prick test is that the skin prick test looks for antibodies to more of the peanut as opposed to the part that triggers the serious allergic reaction.  These researchers believe that traditional skin prick test gives too many wrong diagnoses.

Out of these 993 children, 80% who were believed to have an allergy did not suffer any reaction after eating the peanut-laced brownies.  That's a huge percentage! Further though "the researchers admit the study only looked at a relatively small number of children, but say they have confirmed the presence of peanut allergy is substantially lower than peanut sensitisation. They write that accurate testing is needed to allow anxious parents to find out whether a child will react to peanuts."

I'm not sure how I feel about this study!  I do agree that better testing is needed, and I wonder how many children are assigned the label "peanut allergic" without complete testing, i.e., blood test, skin test and food challenge.  Unfortantely, I know that Abigail is allergic and isn't just sensitive.  She had a mild reaction from ingestion before she was 2 years old.  We then had her blood tested, and her IgE numbers confirmed the allergy.  Because she had a reaction, she didn't have a skin test until 5 years later when we started the trial at Duke.  It did also end up being positive. Incidently, part of the criteria for being part of a clinical trial is that a child or adult must have had an actual reaction, and now, each participant is food challenged at the start of every study.

Because no one knows the type of reaction they're going to have at any given time if exposed to peanuts, I still see that peanut allergic individuals have no choice but to continue a strict avoidance.  I would hope that no one would assume they were just sensitive to peanuts and not allergic until a test confirmed as much.  I am intrigued though and look forward to seeing more results of this study.  I'll be asking our doctor at Duke questions about this study next time we're there.

I'm also a tad bit anxious when a study like this is published.  There is a large population that think we are making too big a deal of peanut allergies especially if it means they are inconvenienced.  These type of studies just add fuel to the fire, and are quite frustrating.  This one tells us that there is a chance that our children, or even ourselves, might just be sensitive, but it doesn't give us the means to find out. So, in the meantime, we have to continue to live by what we are told, and in many cases, what we've experienced.  Right now, we know that there is a risk of possible death if a peanut allergic person ingests a peanut product.  Until more is learned, that has to be our driving force!

Four Months & Two Weeks

We had our 10th visit to Duke this week.  We've been part of the Peanut Sublinigual Clinical Trial now for 4 months and 2 weeks.  I'd like to say we were halfway done, but I can't.  We've still got over 7 months to go before we do our first food challenge.

While we were at Duke this week, a mom and son came in for their last visit before their food challenge in December.  As we get closer and closer to Abigail's challenge, there will be more weeks between visits and fewer dosage increases.  This family was up to their highest dosage and were now just going every 6 weeks.  They are going to be either the first or second participant in our study to do the food challenge.  I was all ears as Dr. Kim was describing what was going to happen on the day of the challenge.

If the kids can tolerate it, they will be given the equivalent of 6 peanuts.  The results of the first challenges that occur in December and January can really impact the study.  If the kids can tolerate the peanut flour than that's fabulous news for us.  Talk about motivation!  If there is a high failure rate, then Dr. Burks and Dr. Kim will make modifications to the study.  Not sure what that means.  Larger dosages, more frequent increases?  Worst case scenario is that we have to start over on the peanut flour study.  The doctors really don't expect that to happen though.  There has actually been an adult on a similar sublingual study who did pass the food challenge.

I asked about Abigail's blood test results from our last visit.  I wanted to find out if her IgE number had changed.  Unfortunately, the results will be locked up until the food challenge.  Even Dr. Kim will be kept in the dark.  Abigail did have another skin prick test at this visit (she did fabulous).  Dr. Kim explained how her results could actually be worse than the initial baseline.  He did 8 pricks, 5 were peanut of various strengths, 1 was the saline prick and the last two were histamine pricks (Dr. Kim thought Abigail moved so he repeated the prick).  The histamine prick serves as the control.  If there is no reaction, then the test is faulty which is what happened at our last visit.  So, we watched and waited for 15 minutes.  The histamine pricks (the two on the bottom right side of her back in the picture) immediately formed welts and large red areas around the welts.  The first 2 pricks, the higher strength peanut pricks also formed welts and red areas.  The 3rd highest strength prick formed a pimple like place and was barely worth measuring.  The 4th and 5th strength prick didn't do anything.  That's a huge change from our first test where every prick reacted.

Do we get excited??  Is she already responding to the drops?  Afterall, it's only been 4 months and 2 weeks.  I asked if it was possible for her to simply be out-growing the allergy.  According to Dr. Kim, for peanut allergies, if a child doesn't out-grow it by the age of 5, they usually don't. Okay, so I'm just a little excited.  If we hadn't had a faulty test at our last visit, I'd be a lot more excited.  I'm still hesitant to start celebrating.  However, it's hard to complain or get worked up over having to drive almost 3 hours to Duke every other week.  Instead, I feel even more blessed at having the opportunity to do this for Abigail.