EpiPen Bag Tag

At Abigail's school, 3rd graders switch classes for math and reading. The kids will eat snack in one of those classes.  Her EpiPen needs to go with her. In the past years, it was kept in the teacher's first aid backpack. Middle of last year, it became her responsibility to grab the backpack and take it to the cafeteria. This year, we think she is responsible enough to also keep up with her medicine during class change. To make it easier, I found this cute leopard-patterned shoulder bag with a pocket for her water bottle and snack and a separate pocket for her EpiPen, Benadryl, medical forms and Peanut Action Plan.

Worried that a teacher or other care-giver might not realize that her bag doubled as a medicine bag, I needed something to identify it's contents. Lately, she's become self-conscious, and while I would have liked a flashing, neon sign, we compromised. I made a bag tag which I hooked to the zipper of the pocket that contained her EpiPen. I like the way it turned out. She personalized the tag by picking out the pattern on the back side of the tag.

Here she is on the first day of school carrying her bag.

She's Ready! I think.

Backpack sitting by the door, lunch packed, snack packed, water bottle filled, outfit laid out, alarms set, school supplies dropped off at Open House, teacher meeting regarding allergy held, Peanut Action Plans printed and posted in classrooms, Peanut Action Plans printed and laminated and attached to inside pocket of backpack and medicine bag, EpiPen and Benadryl tablets packed in medicine bag, new EpiPen bag tag made and attached to..you guessed it...medicine bag, medical authorization forms dropped off at health room, EpiPen and Benadryl tablets packed and ready to drop off at school health room, special "Hope you are having a great day, miss you, love you" note written and tucked into lunch box, nervous jitters calmed before bedtime, prayers said asking for a successful first day, camera ready by back door...I think we're ready for Abigail's first day of 3rd grade!

Just in time for school....

Well, the missing-in-action blogger is finally back at her desk. Just in time to complain about the amount of work it's taking to get Abigail ready to enter 3rd grade. I'll spend the rest of the evening filling out emergency action plans, packing medicine and making sure all "i's" are dotted and "t's" crossed. Tomorrow morning we meet with her teacher to discuss her peanut allergy. How easy it would be for us parents of allergic children if all we had to do was purchase school supplies and maybe a couple of new outfits at the start of each school year.

Speaking of meeting teachers, I'm a touch puzzled with her's. I reached out four times in 8 days using 3 different forms of communication in an effort to schedule this meeting. It wasn't until Open House last night that she acknowledged receipt of my messages and asked what time was good to meet. I'm hoping that's not an indication of things to come. She did present an excuse. She was busy unpacking and prepping the classroom.

We don't have a 504 in place for Abigail. Up until this point, her teachers and the school administration have been super easy to work with and very accommodating. Do you guys have one? We're so close to the end of the trial. Just one more school year. I don't want to permanently label Abigail if we can get through this next year without one. I've got an e-mail out to our doctor at Duke to see what they are advising their trial participants. I'm anxious to hear back and see if they think Abigail should have one even if she is considered "peanut allergy free" next summer. However, depending on the outcome of our meeting tomorrow, I might be filling out the paperwork. I'll keep you posted.

I have several tools that might be of some help in back-to-school preparation. Links to classroom letters, safe snack lists, etc., are in the right hand margin. I've used Google Docs. Let me know if you have trouble accessing them. I also have an Allergy Action Plan that I give to each teacher to hang in their classroom and a smaller version that I laminate and put in her medicine bag, backpack, etc. I haven't been able to save those and keep their format in tack so if you are interested in those documents, e-mail me, and I'll send them over.

There is still a lot to be done this evening. I've made an allergy tag for her EpiPen bag that I'd like to share. I also have a ton to catch everyone up on. It's been a very busy summer. Thanks for your patience. Thanks also for continuing to support my efforts with this blog. You guys are great!

More Good News...

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

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

Abigail Likes It!

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

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

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

It's Been Another 6 Months

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

Another visit down!

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

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

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

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

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

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

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

Anaphylactic Reactions and Teenagers

Wow! I just watched this video on YouTube, and am somewhat speechless.  It's part of the The Anaphylactic Allergy Podcast Series (104) and features a high school student that had no history of a peanut allergy until age 15 when she got sick just walking into a Thai restaurant and smelling peanuts.  She's had numerous reactions requiring the administration of an EpiPen.  When she does come in contact with peanuts or the smell of peanuts, her lips swell to the point they crack and bleed and her face swells so that it peels.  Swelling in her throat follows sometimes causing her to black out.

A standing ovation should go to the Palos Verdes High School administration for requiring a peanut free school in order to keep her safe.  They even went so far as to require all of the students in her classes to sign a statement that they understood that there was to be severe repercussions if they brought peanuts to school.  Instead of protesting, the students took this teenager's safety to heart and did everything they could to look out for her.  It can work!  Maybe the school in Florida where parents were asking that the 1st grader with the severe peanut allergy be removed from school should take notes!