Recently, while looking through some posts in various Facebook groups I belong to, I came across an interesting and unexpected post written by a fellow food allergy mom. She was tired of reading about success stories when it comes to Oral Immunotherapy, or OIT. My initial thought was, wow, this mom is going to get a lot of negative feedback about her post. However, a second later my thought changed to me too! I am also tired of hearing all of the success stories, not because of jealousy, but because it is not an option for everyone. For our family, it does not feel like the right choice. For some insurance won’t cover the procedures, for others, it is not offered by their doctors.
For those who don’t know what OIT is, here is how F.A.R.E. explains it:
For some the 100th day of school has already passed, for some it occurs next week, either way, it’s here and many schools are marking this “important” day with food.
I am a member of many private Facebook pages specifically created as a safe haven for allergy parents and more and more I keep reading about food based celebrations happening and A) their child is left out because the food being used is one they are allergic too or B) the parent of the allergic child is going out and purchasing all of the supplies so their child can participate. Wow, I am not sure which is worse, being left out or having to pay for all of those Enjoy Life, Cherry Stone Kitchen and Divvies treats. Yes, I know, being left out is far worse.
What teachers, parents, schools and PTO’s need to start thinking about is how to hold the same types of celebrations without food! So here are my food free suggestions for the 100th day of school celebrations:
Recently, there have been a lot of stories related to living with food allergies and finding a cure. We have all read about the Peanut Patch and OIT therapy but there are other "alternative" options in the pipe line. These options are rather unique to say the least. One of these "unique" stories come from The Korea Bizwire entitled; Traditional Korean Drum Sounds Suppress Acute Allergic Shocks. Apparently a few doctors in Korea, "...verified the effects of sounds from a traditional Korean drum (called a buk) through animal experiments, and submitted a patent application in the U.S. regarding therapy related to the results." No, this doesn't mean you should run out and buy a Korean drum to carry along with your epinephrine but, it will be interesting to see how this story plays out.
Back to School – I used to love this phrase, full of promise and the smell of freshly sharpened pencils. When my son Alex was about to start kindergarten, I could only feel overwhelmed and scared. He’s allergic to peanuts and tree nuts, and I was sending him off into a world where peanut butter sandwiches are a staple. I’m not gonna lie – that first year was so hard! But each year has gotten better – not because people understand food allergies more, but because WE understand what Alex needs more and have let go of anything unnecessary to his safety. I know when the 504 meeting will be, when I’ll meet with the teacher, my list of topics to cover, and we have a process for Alex to follow at school. Being prepared has been key for us to feel comfortable.
Summer is here, you have been busy enjoying the pool, planning your upcoming vacation and scheduling play dates. Lying in bed at night, when things slow down it hits you, your food allergic little one is heading off to school for the first time this fall. The lull of summer quickly fades and panic sets in, are you prepared? Is the school prepared? Is the teacher prepared? Forget sleep, you are up for the night.
Your little one has been under your protective watch 24/7 for over four years. Now, you have to hand them off to someone else. You envision spending your days in the school parking lot, peeking in windows, hiding on the playground. I know, I’ve been there. I’ve peeked, stalked and on occasion “checked in”.
When the story of 13 year old Natalie Giorgi’s death due to an anaphylactic reaction spread across the allergy world in April of 2014 I shared the story on the Facebook page I manage, I listened to what people said and questions asked, but then I tuned the story out.
For allergy parents like myself it is difficult to hear about your worst nightmare coming true. To learn that this young girl and her parents had managed to keep Natalie safe for 13 years, then a bite into a favorite treat changed their lives forever, changed our lives forever.
This was too close to home. Every death due to a food allergy hits too close to home.
Often times we get consumed with caring for and worrying about our son that we forget how amazing our 2 children without food allergies are! They are often the first to ask, “Is Ryan okay?” when he is coughing or his medical kit is open on the counter. They will ask if the restaurant we are headed to will be safe.
My son works hard at school, sometimes not hard enough.
My son plays hard, sometimes too hard.
My son is goofy, resilient, and sometimes fresh (he is 11 years old, after all).
My son is a good kid with an infectious smile who loves to laugh and skips when he is happy.
My son is fearful. Not fearful of the boogie man or his latest addiction, Big Foot; he is afraid of food.
Touching food, smelling food and people eating near him. He is afraid to go into relatives' homes because he knows their younger children touch toys, couches and the remote with their sticky fingers.
My son has life-threatening allergies to all tree nuts and peanuts. Although he does not remember his first anaphylactic reaction (anaphylaxis is a serious, rapid allergic reaction and may cause death) at the age of 1, he does remember his second reaction at the age of 7.