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.

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!!

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!

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.

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.

New Rules for Diagnosing Food Allergies

Last week, as reported in the Wall Street Journal, the National Institute for Allergies and Infectious Diseases issued the first clinical guidelines for diagnosing and treating food allergies stating that blood or skin tests alon aren't sufficient when making a diagnosis.  The recommendation is that a combination approach should be taken including a detailed medical history review, and in some cases, an oral food challenge.

According to the WSJ articule, "the guidelines, published this week in the Journal of Allergy and Clinical Immunology, are aimed at resolving wide discrepancies in diagnosing and treating food allergies among allergists, dermatologists, gastroenterologists, pulmonologists and emergency physicians, as well as pediatricians and internists. More than 30 professional organizations, federal agencies and patient groups were involved in the report, which was in the works for two years."

There has been a great deal of press lately on the topic of whether the many children diagnosed with food allergies over the last couple of years actually have a severe enough allergy to warrant completely removing all possibilities of contact.  In many cases patients or parents of patients have been told to eliminate multiple foods only to later do a food challenge and find the patient can tolerate all but one or two of those foods. These recommendations were based on the results of either or both the RAST blood test or the skin prick test.  According to experts, "having IgE antibodies to specific foods doesn't necessarily mean a person will have an allergic reaction when eating the foods. Skin-prick tests are more predictive, but they, too, measure IgE "sensitization," which may not result in an actual reaction. The report estimates that 50% to 90% of presumed allergies are not, in fact, allergies."  In fact, according to the WSJ, a study published online in the Journal of Pediatrics this fall reviewed 125 children evaluated for food allergies and eczema at National Jewish in 2007 and 2008.  They found that over 90% of the foods the children were avoiding were returned to their diets after food challenges.

Here is a great illustration of the new clinical guidelines for diagnosing food allergies as opposed to what has been happening.

Other significant guidelines from the National Institute for Allergy and Infectious Diseases include:

• Introducing solid foods to infants should not be delayed beyond 4 to 6 months old.
• People with an egg allergy need not avoid the measles, mumps, rubella (MMR) vaccine. But they should avoid vaccines for influenza, yellow fever or rabies.
• Even those at high risk for food allergies, such as family members of those with allergies, may not need routine testing. One exception: siblings of children with severe peanut allergies. 

I'm hoping these guidelines have a very positive impact of the understanding of food allergies.  I simply couldn't imagine living the lifestyle that our family has lived now for seven years only to find out that our child didn't really have a severe enough food allergy to warrant all of the precautions that we've put into place.  What a cruel twist of fate that would be.  Also, maybe if there is less confusion within the allergy community, i.e., different recommendations from different doctors, different requirements for different allergy patients, etc.,  it will make it easier for the general population to better understand the implications of a true, life-threatening allergy, and have a better appreciation.. maybe even a little more tolerance for those with allergies.

Immunoglobulins

I've thrown around the term "IgE" quite often in my posts and felt it time to take a closer look.  If a person's Immunoglobulin E (IgE) level, derived from a simple blood test, is elevated, it usually indicates a food allergy and increases with the number of allergies a person has.  I don't know Abigail's total IgE number. I just know her peanut specific IgE number.  It's the number that tells us the percent chance of her having a reaction if exposed to peanuts and is the number that will tell us if her tolerance to peanuts is improving on the study.

There are actually several Immunoglobulins, or antibodies, in our blood.  According to WebMD, antibodies are substances made by the body's immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them.  There are 5 different types:

• IgA antibodies are found in the nose, breathing passages, digestive tract, ears, eyes, etc., and protect the body surfaces that are exposed to the outside.  Celiac disease is diagnosed using IgA antibodies as a starting point.

• IgM antibodies are found in blood and lymph fluid and are made in response to infections.

• IgE antibodies are found in the lungs, skin and mucous membranes.  They cause the body to react against foreign substances like pollen, dander or food.

• IgD antibodies are found in the tissues that line the belly or chest. WebMD states that it's unclear how they work.

• IgG antibodies are found in bodily fluids and are the most common making up 75 to 80% of all antibodies in our bodies. IgG antibodies help fight bacterial and viral infections.

According to the literature that Immuno Laboratories provided me, the majority of negative reactions to foods, or food sensitivities, with delayed symptoms are caused by IgG antibodies.  The literature states that 90% of immune reactions to foods are non-IgE.

I've been so fixated on IgE numbers that I never really paid attention to anything else.  It wasn't until I started looking closer at the difference between food allergies and food intolerances, that I realized that IgG numbers were quite important.  In my quest to now understand my own food sensitivities and those of several family members, I've been doing more research into the difference between allergies and intolerances.  In the next couple of posts I'll look closer at the symptoms of food sensitivities and the Immuno 1 Bloodprint test that identifies which foods a person is sensitive to.

On a more personal note, I went to my physician last week to discuss my symptoms which I believe are directly related to an intolerance to one or more foods.  I mentioned IgG antibodies, and she said it was something she wasn't familiar with.  She ordered an IgE food allergy test and Celiac test and then indicated that the most she could do to help was to refer me to an Allergist.  While not surprised, I'm frustrated that I have to go through the process of finding a doctor that is more knowledgeable on the subject of food sensitivities.  I haven't received the results of either test yet, but am expecting both to come back negative.

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!

IgE Numbers, Part 2

At our visit to Duke this week, I was able to spend some time talking with one of the wonderful nurse practitioners about the upcoming food challenges.  Several of the Peanut Sublingual Immunotherapy participants are quickly approaching the 12 month mark and the first challenges are scheduled for December 10th and the 14th.  I mentioned how I was anxiously awaiting the results, and she very quickly reeled me back in. With this being the first peanut sublingual study for children, there are a lot of unknowns.  It's very possible that the first food challenge won't show significant results and may even mean a change to the study protocol.  I'll still call soon after the challenges to find out the results, and hopefully, the kids consume the equivalent of a peanut or two.  If they don't, then we'll keep pushing through, Abigail will keep taking her drops and we'll hope that with more time we'll all see the results we are hoping for.

I'd love to be able to see Abigail's IgE numbers over the course of the study, but they are sealed until the end.  The goal is to get her number down from 14 to a single digit.  At a single digit, her chance of having a allergic reaction drops significantly, as well as the risk of anaphylaxis.  She'd still be allergic to peanuts, but her allergy would not be life threatening.  Abigail would be considered "cured" of her peanut allergy if her number was a 1 or less.  She's had two blood draws to determine her IgE number since starting the study.  The first was the baseline (which was 14), and then again at 4 months.  Her next blood draw is at the 8 month mark.  We can't see the numbers so that we don't get discouraged if they're not changing.

IgE numbers only tell the percentage chance of having an allergic reaction, they do not tell the type of reaction or severity.  Whether the IgE number is 14 or 364, there is still a 95% chance of having a reaction.  I'm going from memory (which is often a risky proposition), but I seem to recall that when Abigail was tested at age 2 and scored a 12, she had something like an 80% chance of having an allergic reaction.  In fact, the doctors at Duke are seeing a trend that their patients with lower IgE numbers are having more severe reactions than those with really high IgE levels.

So, there is a possibility that Abigail's score of 14 might mean that she would have a more severe reaction than a child having a score of 364.  I do feel that she has an advantage starting the study with a lower number. Doesn't it stand to reason that the lower the number, the less distance one has to go to get to single digits? Maybe it takes less time to build up a tolerance to peanuts with the sublingual therapy?

Here's a table that I copied from Wikipedia that shows IgE levels and their correlating allergen scores using the RAST test method.

RAST rating	IgE level (KU/L)	comment
0	< 0.35	ABSENT OR UNDETECTABLE ALLERGEN SPECIFIC IgE
1	0.35 - 0.69	LOW OF ALLERGEN SPECIFIC IgE
2	0.70 - 3.49	MODERATE LEVEL OF ALLERGEN SPECIFIC IgE
3	3.50 - 17.49	HIGH LEVEL OF ALLERGEN SPECIFIC IgE
4	17.50 - 49.99	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
5	50.0 - 100.00	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
6	> 100.00	EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

Here are a couple of other things I learned from our many trips to Duke.  First, if a child doesn't outgrow a peanut allergy by the age of 5, he or she usually won't.  Second, IgE blood tests are not standardized.  The RAST test was primarily used from 1974, when it was invented, until 1989, when it was replaced by the ImmunoCap Specific IgE blood test.  This test may also be described as CAP RAST, CAP FEIA or Pharmacia CAP.  Wikipedia states that approximately 80% of the world's commercial clinical labs are using this newer version.  But, if you are comparing recent IgE blood test results to a previous test, you need to make sure that the labs are using the same test method.  Because the "Class" scale is assigned by the lab, unless you are comparing results using the same test method, one person's Class 3 may not be the same as someone elses.

We've got just one more visit before Abigail is on the "Maintenance Dose."  That means some relief for us on the frequency of trips.  After this next visit, we don't go again for six weeks.   Just in time for the holidays!

A Few Updates.....

I wanted to give a quick update on our trip to Duke last week.  It was our 12th visit and completely uneventful.  We drove a little over 2 hours there, got an increase in dosage (2 drops up from 1 of the highest concentrate), waited for the required 1 1/2 hours while they monitored Abigail for a reaction (she did have a little more severe tingling in her ears and throat) and then we drove the 2 plus hours home with a stop to visit my dad and sister and then again farther down the road for a little shopping and dinner.  We are down to just 2 more visits before we hit the maintenance dose.  Then we'll go every 8 weeks instead of every 2.  That's pretty exciting for us.

We had a safe and fun Halloween.  Hope everyone else did as well.  It's great to have neighbors who understand Abigail's allergy.  Many of them have safe candy set aside just for her.  As seen in the picture, this year her pile of safe candy was much bigger than the unsafe candy.  We packaged up the smaller pile along with her excess safe candy and added it to a collection going to the Charlotte USO who will send it with deploying troops to Afghanistan.  Thinking positively, I'm hoping in a year or two, we'll no longer need to sort candy.  I'm hoping Abigail will be able to eat whatever she receives.  Selfishly, it means the rest of us can also eat those forbidden candy bars.  I snagged a few Kit Kat's after she went to bed, but packed up the Reese's Cups and other peanut base candy bars.  The risk outweighs any enjoyment I might have by eating one.

Speaking of food that we can't eat, it seems that so much of the healthy, organic food I would like to purchase for our family is manufactured in plants that also process tree nuts/peanuts.  I was very disappointed during my last trip across town to Trader Joe's.  It's one of our favorite stores, and for the last year, a place where I did a great deal of our grocery shopping.  For a while now, our family has been eating foods without high fructose corn syrup, partially hydrogenated soybean oils, trans fat, artificial sweeteners, and of course, all nuts.  We drink organic milk and purchase organic meats.  I'm also trying to remove foods from our grocery list that contain artificial dyes. Trader Joe's had a lot of products at a really good price that met all of our restrictions.  I say "had" because the last time I went, a good many of the products that I buy were labeled "manufactured in a plant that processes tree nuts/peanuts."  While I can commend Trader Joe's for their great labeling practices, I was disappointed that there were yet more unsafe, healthy products that I could not purchase.  I asked the manager about all of the new labels, and he told me that they had recently changed distribution centers.  The new one was closer and while stocking the same Trader Joe branded products, they used different manufacturers to produce those products.  Unfortunately for us, those manufacturers also produced more products with tree nuts/peanuts in the same facility.  An important lesson here is that you should always read the label even if it's a product that you've purchased for years.  But, back to thinking positively, after the Duke clinical trial we might be able to eliminate "may contain" or "processed in a plant with tree nuts/peanuts" from the long list of food ingredients that our family chooses not to consume.  A very long list of organic products would then be on my "safe to purchase" list.

In the coming posts, I want to finish discussing IgE numbers and also discuss a great book I'm reading.  It's called "The Unhealthy Truth" and is written by Robyn O'Brien.  She discusses how our food is making us sick from food allergies to ADHD to cancer.  She brings up a whole new topic for me which is resulting in yet another food that I want to eliminate from our diet, food that has been genetically modified.  I was repulsed to read about the effects of rBGH on our dairy products and disheartened to read about the lack of regulation on genetically engineered crops of soy and corn, to name just a few.  I've added a few links over in the margin if you want to start doing your own research.  I'd add a word of caution though, it'll change the way you think about your food.

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.

What's an IgE? An Introduction....

I've been wanting to post about IgE numbers for a while, but it involves science and medicine, neither particularly strong subjects for me.  I'm on the opposite end of the spectrum with interests centering around art and design and creative thinking.  So, why even tackle the subject?  Unfortunately, it just keeps coming up.

In conversations, parents of allergic children almost always get around to telling each other what their child's IgE number and/or Class is.  It's pretty much the only definitive description we can say about an otherwise very uncertain physical condition.  My daughter is allergic to peanuts.  Her IgE number is 14.10 kU/L, and she is a Class 3.  The number is up from the last time we had her tested when she was 4.  It does not mean that she is becoming "more allergic".  Her IgE number only tells the likelihood of her having a reaction.  At a 14, I know she has a 95% chance of having a reaction if she ingests any peanut protein.  What I don't know is when or if she'll have a reaction or to what degree of severity.  I don't know if the reaction will only need an antihistamine or require the dreaded EpiPen.  I don't even know how she got her allergy or if she'll have it her entire life.  That IgE number is the only known in a very scary world of unknowns.  We parents hold onto that number.  But what is it really?

There are 3 ways to determine if someone has an allergy.  The most definitive, most expensive and most risky is a food challenge.  The patient starts with a tiny amount of food and continues to ingest until the first sign of a reaction.  If there is a reaction, then the person is allergic.  If not, they're not allergic.  Usually the amount of food is so small that a patient might just break out in hives or maybe vomit, but there is the risk of  anaphylaxis.  At Duke, whenever a food challenge is administered (at least in the clinical trials) an IV is inserted as a precaution.  Abigail is not scheduled for a food challenge until spring of 2010.

Another allergy test method is a skin prick test.  In this test, the skin is pricked and the allergen in question is applied.  If there is an allergy, the prick area swells and the skin around it gets red and itchy (almost like a mosquito bite). The test can be used for both environmental and food allergens.  While this test is uncomfortable and somewhat subjective, it is less expensive and more reliable than the next method which is the blood test.  About.com does a good job describing and comparing both of these tests in layman's terms.  According to the site, blood tests are becoming more useful in determining food allergies because they measure the specific amount of allergic antibody to a food.  The downside of blood tests, however, is they tend to give more false positives and negatives, and may indicate an elevated antibody, i.e., an allergy, which may or may not necessarily equate to an allergic reaction.  It's from the blood test that the IgE numbers and Classes are assigned. 

Blood Test (RAST, CAP-FEIA, ImmunoCAP)

The RAST test or radioallergosorbent test detects the amount of IgE that reacts specifically with a suspected or known allergen (Wikipedia).  It's an older test and many labs are using a non-radio active test like the CAP-FEIA or ImmunoCAP.  Duke University Medical Center uses the CAP-FEIA.  It's important that you know which test your doctor is using, but I'll get to that later.

So what is an IgE?  I'm using a definition from kidshealth.org for Immunoglobulin E (IgE).  It's the simplest definition I can find online.  "IgE is a type of protein in the body called an antibody. As part of the immune system, it plays a role in allergic reactions. When a person is allergic to a particular substance, such as a food or dust, the immune system mistakenly believes that this usually harmless substance is actually harmful to the body. In an attempt to protect the body, IgE is produced by the immune system to fight that particular substance. This starts a chain of events leading to allergy symptoms."  For example, airway constriction in asthma, local inflammation in eczema, increased mucus secretion in allergic rhinitis and potentially fatal drop in blood pressure as in anaphylaxis (again from Wikipedia).   However, perhaps our nurse last week at Duke explained it best.  As she described it to Abigail....the peanut soldiers think they need to fight peanuts but we're training them not to.

In a discussion with Dr. Kim at our last visit to Duke, I learned how the IgE number is determined.  Peanut protein is adhered to the inside of a test tube.  The patient's blood is then poured into the tube, left to sit for a controlled amount of time and then shaken.  The peanut antibodies in the blood will stick to the peanut protein.  In other words, the antibodies in the blood "attack" the protein in the tube much like it does in the patient's body.  The extra blood is then washed off and the blood that is attached to the protein is measured.  That amount is the IgE number.  The Class is something assigned by the particular lab running the sample.

I've found a RAST scale that I want to post.  I also want to discuss a warning about how the big laboratories use different standards when reading the results.  There's also more on the topic about what the IgE numbers actually mean, i.e., chance of out-growing the allergy and chance of having a reaction.  But, I can just picture eyes glazing over with the amount of information thus far.  So, until next time....