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.

Easter Experiment

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

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

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

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

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

Columnist Changes Tune

Pick an adage, "open mouth, insert foot", "eat crow", "change in tune", "what goes around comes around", they all apply to columnist Joel Stein.  Back in January of 2009, he wrote an opinion article for the Los Angeles Times titled "Nut Allergies - A Yuppies Invention."   Here's his opening paragraph.."Some kids really do have food allergies.  But most just have bad reactions to their parents' mass hysteria.  Your kid doesn't have an allergy to nuts.  Your kid has a parent who needs to feel special."  Lovely, huh?  Glad I missed it.

Mr. Stein recently had a follow up article published just last week in Time titled "Aw, Nuts!" in which he describes the experience of having his 1 year old son eat some mixed nuts and then rushing him to the emergency room with symptoms of hives, swelling eyes and vomiting.  Yes, his son has a nut allergy.

There was a lot of backlash from the food allergy community to Mr. Stein's first article.  Having just read it this week, I can understand why.  I'm not going to go into a detailed review of his article, you can read it and see.  It's funny that the part that rubs me wrong references the same study that I did in a past post (http://peanutclinicaltrial.blogspot.com/2010/03/allergic-reaction-anxiety.html). It was a study done in 2003 regarding allergy anxiety.  It showed that kids who were told they were allergic to peanuts had more anxiety and felt more physically restricted than if they had diabetes.  I referenced the study to indicate how hard it is to help children with life-threatening allergies to remain well-adjusted.  Mr. Stein used the study as a follow up to his comment, "Parents may think they are doing their kids a favor by testing them and being hyper-vigilant about monitoring what they eat, but it's not cool to freak kids out."

Cool or not, as parents, we are doing everything in our power to keep our children safe, and if that means that our kids need be taught to monitor everything they eat, then so be it.  Obviously, this statement came from a time when Mr. Stein didn't understand the reality of living with a life threatening allergy.

I wish the best for him and his son.  They've got a long journey ahead.  Having a severe food allergy is no walk in the park for either the person with the allergy or their family.  Having a food allergy and a dad that has nationally "opened mouth and inserted foot" is going to be quite the challenge.

Cross-Contamination Concerns

The last couple of weeks, the peanut allergy message boards have been full of posts discussing companies' labeling policies.  One post that was concerning involved a teenager that had an anaphylactic reaction to Hershey's Rolo Caramels.  Someone responded to that post stating that she had spoken at length with a supervisor at Hershey's.  He told her that the majority of their products were manufactured on shared equipment with peanuts/nuts, and that the 1.5 oz Hershey bar was the only one made on a dedicated line.

The Hershey's allergen statement on their website reads as follows: "We take food allergies very seriously at Hershey and have strict procedures in place to prevent crossover of allergens into other products that do not contain the allergen. In instances where we have a concern about possible crossover by an allergen we take the added precaution of including an allergy information statement on the label."

Now my question is how many companies use shared manufacturing equipment, clean it and consider that they've removed all possibility of allergen cross-contamination??  It you believe Kashi's website information, it's impossible to remove all traces of peanut/tree nut..."Scientific evidence has shown that consumers with peanut and tree nut allergies can have a severe reaction to amounts that are below the current detectable limits based on existing technology."

I spent over 2 hours the other night searching the internet for some study or article that would validate either position, and didn't come up with much.  I did find the issue well stated in a 2008 study introduction published in the Journal of Food Protection, "Although allergen removal through cleaning of shared equipment or processing lines has been identified as one of the critical points for effective allergen control, there is little published information on the effectiveness of cleaning procedures for removing allergenic materials from processing equipment. There also is no consensus on how to validate or verify the efficacy of cleaning procedures."  Now, if I could only get access to the results of that study!

I found a ton of food industry articles on how to manage food allergens in the manufacturing processes as well as information on the type of tests available to test for allergen residue on equipment. A group from the University of Florida studied the effectiveness of commercial allergen test kits.  Their results were that the three common cleaning protocols regularly used in the food industry did not yield the same results. Some were better than others.  Does this mean that food allergy savvy parents need to ask what test kit a manufacturer uses to verify that there lines are clean and that there is no chance of cross-contamination?

In 2001, the Senior Health Policy Adviser for the Grocery Manufacturers Association offered testimony on the challenge of labeling food allergens. The speaker addresses the challenge of cleaning ingredients like peanut butter on manufacturing equipment.

Anxiety - A Symptom of Food Allergies?

Abigail's stomach started hurting 3 weeks or so after starting the Peanut Clinical Trial at Duke University.  Almost a year later, it still hurts.  Is it coincidence or a result?  I'm having a hard time answering that question.

When her belly first started hurting, it was usually dinner time or soon after at bedtime.  In the beginning, Abigail couldn't really tell me much.  Not having had a lot of stomach issues as a child, she really couldn't explain what she was experiencing.  Now she can tell me that it doesn't burn like acid indigestion nor does she feel nauseous.  It just hurts in her belly right around her belly button area.  The ache comes and goes.  She also occasionally regurgitates.

After a visit to the pediatrician and trying childrens' Pepto, Miralax and then Prilosec for a short period of time, I began to consider that her bedtime belly aches were a result of being anxious about school the next day or even not wanting to go to sleep (she's always had a good deal of bad dreams).  When she'd complain, I'd tell her to go to sleep and that it'd quit hurting.  Sounds pretty callous, but I didn't want to feed the anxiety.  I was a little concerned when one evening she started going into a full scale panic attack.  Fortunately, that's only happened once, and I learned I could distract her by talking about something fun to take her mind off of whatever she was anxious about.  At that point, my husband and I considered counseling.  After all, she's was only 6 and way too young to start having panic attacks.  However, with her belly just hurting at night, and with her somewhat being able to "manage" it by thinking of other things, I never scheduled an appointment. Well, now her belly hurts during the day as well as continuing to hurt off and on at night.

Early on, I asked our doctor at Duke, but he knew of no one else in the program that was experiencing anything similar. So, for a year I chalked it up to coincidence.  Coincidence also that she takes her drops late in the afternoon, and if her stomach hurt, it would always be dinner or bedtime, 2 to 3 hours later.  Then, I started doing research on the impact of food on Attention Deficit Disorder, something else she's showing tendencies towards, and began finding articles showing anxiety as a symptom of food allergies and/or food intolerance.  After hours of internet searching though, I'm no closer to an answer.  I can't find any link between the two on any site that I feel has high enough credentials.  I found one study done in 2001 that found a link between allergies and panic disorder but no other anxiety disorders. 

So, what now?  There is a possibility that the peanut protein drops Abigail takes on a daily basis is causing a mild allergic reaction, and as one particular article suggests, symptoms are manifesting in her weakest organ system, the nervous system, causing anxiety which in turn is causing her stomach to hurt.  It could be that subconsciously, she is more anxious about her allergy than she realizes and her stomach hurts as a result.  What if she's developed an additional food intolerance?  It's also possible that her belly is inflamed from the continuous exposure to the peanut protein and that's why it hurts.  In those cases, the anxiety is the coincidence.

Right now, I'm operating on the assumption that the last option is what is occurring.  After consultation with her pediatrician, we've started Abigail back on Prilosec.  According to her doctor, it could take 6 to 8 weeks for it to work. I didn't give it to her for that long last year when her belly first started hurting.  If it doesn't help, then our next step could be a visit to a GI doctor and an in depth conversation with our doctor at Duke. 

Please leave a comment if any of this is sounding familiar.  I'm stumped and frustrated.  There's nothing like the feeling of not being able to help your child!

Allergic Reaction Anxiety

More than 12 million adults and children suffer from a food allergy.  Many are life-threatening, meaning that if they ingest, or in some cases are just exposed to a certain food, their body goes into extreme defense mode.  It causes their blood pressure to drop leaving the brain starving for oxygen and inflammation in the lungs to occur causing severe shortness of breath.  These people, including my daughter, have to consider every food they eat.  Everywhere they go, they bravely carry an epinephrine device with the understanding that at some point in time, a needle might be jabbed in their thigh.  They have parents and loved-ones that are super vigilant, sometimes to the point they feel suffocated and crippled.  In some circumstances, they're isolated and even blamed for causing inconveniences for others.  They've been told that they're blowing their allergy out of proportion and even labeled "disabled" by the Americans with Disabilities Act.

Many food allergy sufferers take their life-threatening allergy in stride, controlling it rather than letting it control them.  Abigail, at 7 and having not experienced a severe reaction, is mostly just upset that she can't eat the foods she wants.  As her parent, though, I've worked extremely hard to make it that way...to give her the right level of "anxiety".  Her dad and I read the labels although she knows how and when to question.  We carry her Epi-Pen, but she for the most part, confirms that we have it.  We discuss all the details of her allergy with her care-givers and create a safe environment for her, but she'll also not hesitate to ask if she's uncertain. She's not ostracized at school because she's matter of fact about her allergy.  She doesn't have to eat by herself but she does make sure that none of her lunch buddies are eating anything with peanuts.  She's not denied special treats on special occasions because there's always a yummy alternative (thanks to me).  And, thanks to the Duke Clinical Trial, we also are blessed to be able to give her something else...a light at the end of the tunnel, the possibility that in several years (just in time for those independent teenage years), she can eat what she wants without the fear of a severe allergic reaction.

But, what about those children that have actually suffered a life-threatening reaction requiring epinephrine and come away emotionally scarred?  Or, are the only child in their school that suffers from a severe food allergy and are feeling isolated?  What about those that are blamed by other kids for not being able to bring a peanut butter and jelly sandwich for lunch?  Even worse, what about being told that it's all in your head...that your allergy can't be as serious as it's made out to be? Regardless of whether you can take it in stride or not, the bottom line is, these kids live with a fear of dying on a daily basis.  Abigail may be well-adjusted (with her allergy) now, but what if circumstances change?

According to a study conducted at the University of Southampton, the quality of life suffers for these children.  The study suggests that "children with peanut allergy have a worse quality of life than those living with insulin-dependent diabetes."  They found that the children with peanut allergies felt more threatened by potential hazards within their environment, felt more restricted by their allergy regarding physical activities, and more worried about being away from home. In contrast, the children with diabetes were more upset about their “restricted” diet, and none mentioned a fear of dying.

That's just the children.  Being a parent of a child with a life-threatening allergy is no walk in the park either.  And, we have the added burden of not projecting our fears onto our children.  There's a good article on the Kids with Food Allergies website.  Titled "Raising a well-adjusted child who happens to have a food allergy", it gives several steps to do just that.  A few include, never let them see you sweat, make your home a safe haven, don't let food allergies define your child and don't make your life revolve around food.

As mentioned in my last post, Abigail has had bouts of anxiety over the last year.  It typically shows up at night around bedtime and manifests itself as a belly ache.  When I ask if it's related to her allergy or participating in the clinical trial, her answer is always an adamant "no".  It could be her age.  It could be school although she does well. I've been doing some research and there is a link between having anxiety as a result of consuming a food that one is allergic too.  That's the next topic.

Great News Segment about Allergies

When we were at the beach earlier this month, I was channel surfing and just happened upon a really good news program on what it's like to have a deadly allergy (food, bees, asthma).  It was from a child's point of view which makes sense because it was a Nick News segment airing on Nick Jr.  Abigail was already in bed, so I couldn't run and grab her so that she could see it.  I've been checking the Nickelodeon website periodically to see if they were going to post the entire segment, and fortunately, they did. 

Here's the link:  "I'm Allergic to My World".  We're going to sit down as a family and watch it this weekend.  I'm interested to see Abigail's reaction.  To see if it means anything to hear her story being expressed, not by her mom or a doctor, but by another child.

Thanks Nickelodeon for making a such a great news segment, for educating our friends, our neighbors, our care-givers. And, for hopefully making a difference in the lives of our allergic children!

Good news this week!

We went to Duke again this week. It was our 7th visit. Abigail has experienced some tingling in her ears and/or throat after most of her drops over the last 2 weeks, even Tuesday before we went to Duke on Wednesday. In the past, the tingling would stop just a few days after a dosage increase. So, this last dosage increase was different, and I was anxious to see what would happen at this visit to Duke after another increase. Surely a hive this time?

No hive. However, instead of the tingling lasting only a minute at most, it lasted almost 10 minutes. It started in her throat, then one ear and then the other. That was really positive. Yesterday, Thursday, we were back to ear tingling for half a minute or so.

Today, though, was a turning point in answering the question of whether or not we are on the placebo or the real stuff. I gave Abigail her drop, and she went out to the garage to jump rope until her 2 minutes were over (remember, she has to hold the drop under her tongue). She came running in before time was up for two reasons. The first, and most important in my book was that her tongue was burning! To the point she was really upset and smacking at her face to make the burning stop. That itself was disturbing, but she was obviously upset and her tongue was really burning. So, after calming her down, I gave her some ice chips which was recommended at Wednesday's visit to Duke to help with the tingling. Actually, they suggested giving her a Popsicle. A Popsicle... really.... for some tingling? That's taking the "making the kids happy" to another level! We then concluded that while jumping rope, some of the drop must have hit the top of her tongue and caused the burning. The ice chips worked, and the burning stopped. Her ears started tingling and again lasted just a minute.

The second reason that Abigail came running into the house and most important to her, she jumped rope 11 times in a row!

Time to offer up thanks!

What is a Peanut Allergy?

I thought I'd take a few minutes to give my readers that are only just a little familiar with peanut allergies some more food for thought (peanut free food that is).

So, what is a peanut allergy? According to Wikipedia, a peanut allergy is a type of food allergy distinct from nut allergies. It is a hypersensitivity to dietary substances from peanuts causing an overreaction of the immune system which in a small percentage of people may lead to severe physical symptoms. It is usually treated with an exclusion diet and vigilant avoidance of foods that may be contaminated with whole peanuts or peanut particles and/or oils.

According to Wesley Burks, M.D., Chief of the Division of Pediatric Allergy and Immunology at Duke, despite their best efforts, many people with peanut allergy will accidentally ingest peanut products. Signs of an allergic reaction to peanuts in young children include skin, respiratory and gastrointestinal symptoms: hives, an itchy rash, wheezing, throat tightening, vomiting or diarrhea. Peanuts are the leading cause of food-induced anaphylaxis, a life-threatening reaction that constricts the airway and lungs, severely lowers blood pressure and causes swelling of the tongue and throat. Nearly 150 adults and children die from allergic reaction to peanuts each year in the US and the allergy causes an estimated 15,000 emergency room visits yearly. The only treatment once symptoms appear is taking an antihistamine, and then epinephrine, to relieve shortness of breath.

Nearly 1.8 million Americans are allergic to peanuts, and 400,000 of those are school-age children, according to the Food Allergy and Anaphylaxis Network. Only 21 percent of children outgrow it. Between 1997 and 2002, peanut allergy in children has doubled. The estimated number of Americans with food allergy has increased, and the scientific community doesn't know why.

More important, though, is what's on the horizon.
Currently there is no treatment to prevent or cure allergic reactions to peanuts. Strict avoidance of peanuts is the only way to avoid an allergic reaction. Sounds easy enough doesn't it? Peanut butter, peanut butter crackers, peanut M & M's...those are all obvious. However, almost all peanut exposure is accidental. Peanuts can also be found in prepared soups, chili, Thai & Chinese foods, ice cream, candy, chocolate, cookies, crackers and baked goods, to name just a few. The Food Allergen Labeling and Consumer Protection Act (FALCPA) requires food manufacturers to disclose in plain language whether products contain any of the top eight food allergens. It does not require manufacturers to disclose whether they also use these food allergens to manufacture another product in their facilities thereby risking contamination. So, what are children and adults with a peanut allergy advised to do? Carry epinephrine injectors to treat anaphylaxis and antihistamines to treat milder reactions.
While several companies have developed promising drugs to counteract peanut allergies, trials have been mired in legal battles.

A medically supervised daily dose of peanuts may help children with peanut allergies greatly increase their tolerance to the food. As reported in the New York Times, the new treatment uses doses of peanuts that start as small as one-thousandth of a peanut and eventually increase to about 15 peanuts a day. In a pilot study at Duke University and Arkansas Children’s Hospital in Little Rock, 33 children with documented peanut allergy have received the daily therapy, which is given as a powder sprinkled on food. Most of the children are tolerating the therapy without developing allergic reactions, and five stopped the treatment after two and a half years because they could now tolerate peanuts in their regular diet.

While the Duke Study has only proven successful for a handful of children to date, we feel considerably blessed that we are part of this ongoing research. Our study is different in that Abigail is not given powder, but a dosage under her tongue. However, we feel confident that she too can benefit from this therapy. On a recent visit to Duke, we found out that an adult doing the sublingual therapy (the same one as Abigail) recently passed his food challenge and was able to successfully consume a large quantity of peanuts. That gives us real hope.