Thursday, August 27, 2009

Back to School

Abigail started school this week.  We are looking forward to a fun and successful year in 1st Grade!

Every fall, moms and/or dads and their school age children hit the stores in droves shopping for a new backpack, lunch box, paper, pencils, erasers, markers, tissues and the list goes on and on.  It's a very exciting time as we cross each item off our Required Supply List provided by the school.  For many parents, after verifying the bus schedule and going to open house to meet the teacher, school preparation is done.  For parents with allergic children, the preparation has just started.

I've spent weeks prior to school starting creating the tools necessary to keep my daughter safe in school.  There's the Food Allergy Action Plan, the letter to her classmates' parents explaining what they can do to help, the Medical Authorization Forms that have to be signed by her Pediatrician, new EpiPens and Benadryl for the classroom, letters for the bus drivers, a safe snack list, peanut safe treats for her to eat in lieu of store-bought cupcakes, etc.  I've also met with the Principal, had a one-on-one meeting with her new teacher and a phone discussion with the school nurse.

Our school has been great!  I know that's not always the case, and many parents have to really go to battle for their allergic child.  My meeting with the Principal was very productive.  My main purpose was to discuss the Clinical Trial at Duke.  Abigail has to miss school to participate.  Right now, we are going every other week.  Based on the appointment time restrictions and the lengthy drive, I'll be picking her up early from school for each visit.  She'll miss a full day of school for each Food Challenge.  I am excited though because during our meeting, I mentioned that I had a letter that I would like to send home with each classmate explaining the seriousness of Abigail's allergy and some precautions that everyone could take to make the classroom a safe learning environment.  The Principal asked that I forward it to him.  He ended up e-mailing it to all the teachers in the school to use if they had a student with a peanut allergy.  I made a difference!!  My husband now jokingly refers to me as his activist wife.  

My meeting with Abigail's new teacher was also very reassuring.  Surprisingly, she has never had a peanut allergy student.  We had a clean slate to work with.  We went over where Abigail would sit in the cafeteria, the fact that Abigail couldn't have table clean-up duty, what information any substitute teacher would receive, everywhere Abigail's medicine had to go, the clean-up procedure for when they ate snacks in the classroom, requests for class parties and other celebrations, etc.  Isn't it amazing the details that we have to address??  Her teacher was fabulous through it all!  At Open House, she sent the letter and safe snack list home with each of the parents and even asked that they consider sending peanut free snacks to school each day something that I didn't ask for.  She is also requiring that each student wash their hands upon arriving to school, after coming in from the playground, after eating snack and after lunch!  I'm so pleased about that.  Not only because it creates a safer environment for Abigail, but also because it'll make a healthier class during cold and flu season!

Here are a few of the documents that I provided to the school.  In each case, I was unable to find one on the internet that totally fit my needs, so I either drafted one, or modified one I found online. 
Peanut Allergy Letter for Classmates
Peanut Safe Snack List
Peanut Allergy Letter for Bus Driver

The Peanut Allergy Action Plan does not upload properly to Google Docs.  You will need to contact me for that file.  My e-mail address is listed under "Contact Me".  I do have to thank a member of my PAK group for the Action Plan.  It was a great idea.  I've condensed it so that it's much smaller, made lots of copies and laminated them.  The teacher has 3 (one to post at her desk, one in the sub folder and one for the first aid backpack).  I gave Abigail's morning and afternoon bus drivers a copy and put one in with her EpiPen that goes everywhere with us.

Enough for this post.  I'm working on a Part 2 to the Back to School Post.  We've come a long way emotionally since Abigail was 2 and starting preschool for the first time.  For all you moms out there that are sending your little one to school for the very first time and are freaking does get easier.

Friday, August 21, 2009

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!

Wednesday, August 12, 2009

To Chick-fil-A or Not To Chick-fil-A?

When Abigail was first diagnosed with a peanut allergy it was recommended by the Allergist that we also eliminate all nuts from her diet and to not eat anything cooked in peanut oil. Our pediatrician also confirmed that it was best to not take the risk of eating foods cooked in peanut oil in case a small portion of peanut would make it through the refining process and end up in the oil. That eliminated one of our favorite fast food restaurants, Chick-fil-A. For my readers not familiar with Chick-fil-A, you guys are really missing out. Next trip south, you should make a point of finding a restaurant and stopping for a meal. For several years it was a place where I would occasionally treat myself to a chicken biscuit or sandwich only when I was by myself. We hated to not have it as an option for Abigail because as far as fast food was concerned, it's relatively healthy, and back in 2004 when she was diagnosed, it was one of the few fast food chains that served trans fat free food.

We avoided all restaurants that used peanut oil to cook with for years until I started asking around. More and more moms with children that had peanut allergies were letting their kids eat at Chick-fil-A and stating that their doctors had okay'd it. I even researched Chick-fil-A's website and they only use a heat processed, fully refined peanut oil. According to the International Food Information Council Foundation, commercial oils are highly refined which removes the protein from the product. Further, it states that "research has shown that individuals with severe peanut allergy have not had reactions to heat processed oils. However, people with a food allergy should avoid “gourmet” or cold-pressed oils because they may contain allergenic proteins, which provide the flavor to the oil. For the same reason, allergic individuals should avoid oils that have been used to fry potentially allergenic foods."

When we started the clinical trial, one of my questions was whether we were going to have to stop eating at Chick-fil-A again because of the peanut oil. Dr. Bird confirmed that hot pressed peanut oils were safe and that we could continue eating at our favorite fast-food restaurant.

Recently, a post was made on an allergic kids group of which I'm a member warning of a friend that had a reaction requiring a visit to the ER after eating at Chick-fil-A. The follow up posts came fast with all types of dire warnings like playing Russian Roulette every time you eat there (this coming from a patient's Allergist).

We just happened to have an appointment at Duke that next day so I again asked the question to our new doctor, Doctor Kim. He also agreed that it was 100% safe (I got the impression it was the entire department's stance). He said from a scientific perspective it was not possible to react to highly refined peanut oil. His reason (if I can reiterate this correctly) is that peanut protein is a lot of amino acids linked together. A person with a peanut allergy reacts to this group of amino acid. With high heat and pressure, those amino acids are broken into so many pieces that the body can't recognize them and therefore doesn't react. Was it possible to have a small particle escape the refining process? He said not from a very large oil producer with huge vats and a tremendous heat source. He did recommend staying away from gourmet restaurants and higher end grocery stores that use peanut oil saying that it may not be as refined or could even be cold pressed oil.

As far as the person that did have a reaction he said you really had to look at other causes, i.e. wheat or milk which would be much more likely or even something consumed several hours prior. I also asked that very telling question...if your daughter had a peanut allergy would you eat there...he responded absolutely.

As I'm doing more and more research, I'm finding it very confusing and at times very difficult to know what to believe. There is so much contradicting information all from very credible sources. Our Allergist and Pediatrician recommended against it, Duke says it's fine. And, it is my daughter's life at stake. Bottom line, I believe you totally have to go with your gut, what you are comfortable with. You have to be your family's own advocate. If you are at all hesitant, don't eat at Chick-fil-A. If you have a great trust in the doctor that's saying it's not worth the risk, don't take it. For us, Chick-fil-A is still a family favorite!

Sunday, August 9, 2009

Sixth Trip to Duke

We went to Duke again this last week. It was our 6th trip. We got there earlier than normal so Abigail got to take her customary trip on the escalator...not once, but twice. I'm always amazed at how the little things can thrill my kids. Riding the escalator up and then down again happens to be one of those little thrills. I'm not sure Abigail fully appreciates or even understands the full extent of our participation in this trial. All she's focused on is that it's a really long drive, she gets poked and prodded (and occasionally pricked) and she has to daily be inconvenienced to take her drops. Little treats like warm bagels with cream cheese from the cafeteria and escalator rides make it tolerable. That, and the surprise books and small games that I pack in our "Duke trip" bag which, by the way, has a large Wake Forest Demon Deacon embroidered on the side. Dad, that one's for you!

At this visit, her dosage increased from 4 drops to 8 drops. Again, she had tingling in her ears and throat. Dr. Kim said that it was a frequently reported sensation for other participants. It sounds silly now, but I asked if there was any possibility that it could be a result of holding up your tongue for 2 minutes or if he felt that it was definitely a result of the drops. Definitely the drops. Again, no sign of hives.

Three other girls came in while we were there. They had all started the trial about the same time as Abigail. I'm always proud of her when she initiates a conversation and tries to make a new friend. There's only been one time though when we've seen a little boy at two different visits. Mostly, it's all new faces every time we go. It would be nice if another treat was seeing a special friend at each visit. Dr. Kim's new schedule is going to mean that we can only schedule appointments on Mondays and Wednesdays so we might start to recognize a few other participants.