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.

Moving

I'm falling behind blogging....again. First it was a busy summer and the preparation for the start of a new school year. This time it's because we've purchased a house and are moving. We're leaving our community of 13 years and moving to z different county located 40 miles south of where we live. It's a full time job right now coordinating the move, packing and making sure the transition will be as smooth as possible for our kids.

In this last year we have put our house of 12 years on the market, sold it, moved to a rental, researched communities, house-hunted and purchased a home. The end of this state of limbo is in sight. One week from tonight we'll be exhausted but moved in.

And after that, hopefully some return to normalcy. First though, I've got to get Abigail situated in a new school. You know what that means, more meetings with the staff, more medical forms to complete, more Peanut Allergy Action Plans to prepare and possibly more allergy awareness to promote.

I've got a huge week ahead of me. Time for some rest. It's going to be another very busy day tomorrow.

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!

Back to School with a Peanut Allergy

Is everybody ready for another school year to start?  Today was finally the turning point for me.  Up until today, I was a little melancholy that the summer was coming to an end.  I feel we've been so busy that we've not had enough time to just relax and play.  But after yet another day of donning my black and white striped shirt to referee yet another disagreement between my 7 year old and 3 year old, I decided it was time for the kids to go back to school.

I met with Abigail's 2nd grade teacher this morning to discuss her peanut allergy.  For the first time since she started school, preschool included, there is another child with a peanut allergy in her class.  Her teacher had not yet met with his parents, so I wasn't able to discern how serious his allergy was or if the parents were super, super vigilant or really low key (I tend to come in somewhere in the middle...cautious, safe, but with the attitude that she still has to live her life to the fullest).  I think it will be good to have another child with a peanut allergy in the class unless either his allergy is not as serious or his parents don't take it as serious and then the students might receive mixed messages, i.e., why is it okay for him, but not Abigail? 

Like last year, this morning I took in a letter of introduction to send home to the parents of her classmates, a Peanut Allergy Action Plan, a list of peanut safe snack/treat suggestions, an Epi Pen practice injector (which wasn't required because her teacher carries one for her own bee sting allergy) and some ideas for a class discussion on food allergies.  This year for the first time I'm going to go into the classroom at the start of the school year and review the "Be a PAL" (Protect A Life) brochure with Abigail's classmates.  I've found a food allergy word search puzzle that they can take home, and if the video is any good, I'll also take in the "Arthur: Binky Goes Nuts" video for the kids to watch.  I checked it out from our public library today and will preview it tomorrow.  I'm also thinking about taking in some snacks to show them how to read the label, and maybe, if it wouldn't embarrass Abigail too much, an expired Epi Pen and an orange to let her show them how to administer it.  I'm wondering if 2nd grade is too early for that?? Lastly, I'll have a certificate ready for each child, also from the FAAN site which names them "Hero's" for looking after their friend's safety.

But, it doesn't end there.  We have a letter ready to give to both her morning and afternoon bus drivers along with a copy of the Peanut Allergy Action Plan, I have school medical authorization forms for the antihistamine and Epi Pens at the pediatrician's office to be signed, I'm waiting for a new prescription to be called in to replace her soon-to-expire school Epi Pens and I've purchased more antihistamine fast melt tablets for a still-have-to-be-packed medicine bag.  And, just one more day left to get it all done!

What I haven't done, and probably won't is complete a Section 504 Plan.  I know lots of moms that do, and if Abigail had multiple food allergies, or if her school was unaccommodating, then I probably would.  If you're unsure, the Food Allergy Initiative site is a great resource in determining whether you should and for giving lots of information to better understand the details of the law.

One more day of summer, and then it's back to school for my big 2nd grader.  I'm hoping it's a fun and peaceful day.  If you're interested in all of the forms I mentioned, be sure to check back in the next day or so.  I'm hoping to set up the links in a separate column to the right of the posts.  Good luck this year!

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 out...it does get easier.