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!

An EpiPen Experience

Let me first start out by thanking the mom that is allowing me to post about her family's recent experience requiring an EpiPen.  She originally shared her story with members of the Parents of Allergic Kids Yahoo Group.  There is some really good lessons that I'd like to share with my readers so I asked if I could also publish her experience on my blog.  Here's her story:

"My son had an allergic reaction which resulted in the use of the epipen. This is only the second time that he has needed the epipen in his 13 years.

But the good news is: the EPIPEN WORKS!!!!

My son is allergic to peanut, treenut, dairy, egg, sesame, mustard. We also avoid fish and shellfish. The reaction occurred at a restaurant we visit quite regularly…the manager knows us and they get his food started when they see us walk in. The reaction started when he took bites of chicken and carrot and had some of his drink…so, we're not sure where the contamination was.

His tongue and throat felt itchy and his throat started feeling clogged. He took Benadryl. I asked him if maybe he was feeling itchy and had a lot of mucous because he had stopped his Zyrtek (in anticipation of upcoming allergy skin test) - this happens to him sometimes. He said that he knew he was having a reaction because the water felt like it was barely trickling down his throat…he said that it was like it went into his throat but it was going down one drop at a time. On way to hospital by this time. I kept telling him to drink his water…wanting to monitor his swallowing plus hoping to get the Benadryl in his system faster. He said he thought he might be a little better so I thought the Benadryl might be working. Then, 1-2 minutes later, he said that all of the sudden he feels like there is something huge stuck in his throat and like someone is sticking a knife in the bottom of his throat. Pulled over and did Epipen.

Last time he needed the Epipen, I was holding the Epipen and my husband was coaching me to "do it." This time, I was telling my husband to do the Epipen.  When you're the one holding the Epipen - it's difficult to convince yourself that you need to give the shot. Soon after he had the Epipen, my son described the feeling to me as 'all the stuff in my throat is dissolving and now I can swallow.'

Normally - the appropriate protocol is to call 911 after giving the Epipen. We were close enough to Levine Children's Hospital and the Epipen was obviously working so we drove there and I called to alert the ER that we were on our way. They kept us until it had been 4 hours since the "incident" and also gave him oral steroid.

Of course, ask your doctor for the best individual action plan because I'm not qualified to give this kind of "advice." But, I learned recently (since the reaction) that at the first sign of any throat symptoms - give the Epipen. I had always thought that you should start with Benadryl. However, the Epipen is not scary, does not hurt and works quickly and effectively.

One thing the hospital didn't tell us…which I think they maybe should have…was to keep Benadryl in his system for a while. That evening, he looked and felt terrible - pale, shaky, nauseous - so I called our pediatrician just to get reassurance that all of these symptoms are expected side effects of meds. since it was already about 7 hrs. since Epipen and 5 hours since oral steroid. The pediatrician said she suspected that he was feeling side effects of meds - probably steroid - and she also told me to give him another dose of Benadryl.  After she suggested that…I remembered that we got that same recommendation after his reaction 3 years ago. However, at hospital discharge, they did not tell us to give a follow-up dose of Benadryl…wonder why that wasn't part of their protocol."

I really hate that she and her family had to experience this, but I'm so glad she shared.  The part describing what her son was feeling as his throat was swelling was particularly moving, but also very helpful if I ever needed to help Abigail identify what she was experiencing.  A few take-aways: 1. No matter how many times you frequent a restaurant or purchase what you feel is a safe food brand, for people with severe food allergies, there is always a risk.  I feel most confident with manufacturers that label a food allergen if there's  even a small risk of cross-contamination, and of course, if I prepare the food myself.  2.  Always carry an EpiPen and do not hesitate to use it if the situation calls for it.  Our doctor at Duke told us that if in doubt (obviously there's no doubt if someone is having difficulty breathing) the best way to tell if you should use an EpiPen is if multiple systems are reacting.  For instance, if you are experiencing hives (a skin reaction) and vomiting (a stomach reaction), use the EpiPen and then call 911.  3.  I had not heard about continuing to use Benadryl even after leaving the hospital.  It's good advise.

I truly believe that the best way to arm yourself and loved ones against the life-threatening effects of a food allergy is knowledge.  Thanks to this mom for giving us another lesson.

EpiPen Practice

You may have already heard of or even done this, and I just might be behind the times, but when a parent at a recent PAK meeting made this suggestion, I couldn't believe that it isn't something recommended by doctors and educators everywhere. It was suggested that parents and allergic children carefully, and with full adult supervision, practice administering a shot of epinephrine using an expired EpiPen and an orange. I thought this was a fabulous idea and had 3 expired pens in the top of my pantry. They've been there for some time waiting to be taken to the pediatricians office for disposal. What a great use for them!

This last Sunday afternoon, Abigail, her daddy and I all got to practice. That poor orange was full of holes by the time we got finished. We recorded Abigail's experience to share with our readers. I should note that prior to recording, we sat down with Abigail and discussed in detail each of the steps and explained how careful she should be with the needle. We also made sure that she understood that epinephrine is not something to mess with and should only be injected when she could not breathe (like she would anyway...it's a needle right?). When she finished her practice shot, she made the comment that she liked doing it and that she wanted to do it again. I guess that's better than being freaked out by the whole experience and wanting nothing to do with her EpiPens. Of course, after seeing the needle, we all developed a slightly better appreciation of the seriousness of what she so casually carries around.

Right now, she carries 2 EpiPen Jr. Auto-Injectors, 3 antihistamine tablets, an instruction sheet and medical release form in a cute monogrammed bag. It goes with us every time we head out the door. That bag has been handed to more people than I can count: Sunday School teachers, coaches, camp directors, friends' moms on play dates, grandparents, etc. After 4 years, it's now just second nature. I keep another set of EpiPen Jrs. at home in the kitchen and during the school year, a set are kept in her classroom and go with her teacher to lunch, to Specials, to the playground and on field trips. There is also antihistamine medicine (liquid and chewable) in the pantry and upstairs in the medicine cabinet. And, until I know with 100% certainty that my 2 year old son is not also allergic, I keep one of those new, very convenient, single dosage Benadryl spoons in his diaper bag. Wish those had been available when Abigail was a toddler. Back then I had to carry a sticky bottle and a dosage cup.

At a recent visit to Duke, we got a new prescription for the adult EpiPens. At 47 pounds, Abigail is right on the edge for the weight requirements. It's still recommended that she carry two pens. Evidently, 35% of reactions require a second injection. It's even possible to have a secondary reaction an hour or so after the first. The Center for Anaphylactic Support provides some other good information as well as offers a free EpiPen expiration date reminder service and a $5.00 EpiPen rebate.

I ran into a mom the other day at church whose daughter recently finished the clinical trial at Duke using peanut flour. The daughter is now eating peanuts daily to maintain her tolerance. How exciting! Anyway, the mom didn't have EpiPens in her purse and she said it felt really weird. I just pray that I have that problem too!!