2013-09-09

School Policy Gone Wrong: Surviving Food Allergies in Florida

The sign outside my son's classroom.

I used to brag about how well my son's school in Pinellas County managed his food allergies. We had a full time nurse, caring staff and effective procedures to both minimize contact with allergens and to treat him quickly if he did have a reaction. Last month it all changed.

A few weeks before my kiddo began fourth grade I contacted his school to set up my annual meeting with the nurse and my son's teachers to go over his Individual Health Plan and make sure everyone was prepared before the year began. To my dismay, I found out that our wonderful nurse was no longer assigned only to my child's school, but was instead supervising it along with three others.

The news got worse. My son has had a doctor's order to give Benadryl to treat contact reactions since Kindergarten. I was told that our school district no longer wanted to administer antihistimines.

Unfortunately the kiddo is so sensitive that his skin will break out in hives when he comes into contact with food residue. My itchy boy needed to take Benadryl six times during his last school year. Without it, the only choices would be to leave him untreated or use an Epi-Pen and dial 911.

I contacted the head of Health Services for the county's school administration. Only after providing specific instructions from my son's doctor as to when Epinephrine or Benadryl should be given was I allowed to bring Benadryl to the school. (This form from FARE was perfect.) I am also now required to come pick my son up if it's given, so that the school will not be liable in case a reaction worsens.

[Please understand I am not advocating giving Benadryl if the food is actually eaten. Natalie Giorgi's recent death was a horrible reminder why there can be no delay in giving epinephrine for ingestion of an allergen. I simply don't have the words to adequately express my sympathy for her family. Their tragedy could far too easily be mine.]

So after extensive preparation and communication with the district about their food allergy policy and my son's Individual Health Plan, I walked into the office on the first day of school with my son's medications and a pile of completed paperwork. THAT'S when I was informed that his teacher would no longer be able to keep his Epi-Pen in the classroom. Instead it would be locked in a cabinet in the empty nurse's office at the other end of the building.

Cartoon courtesy of  Tiffany Glass Ferreira.

For Day 1 of school the Epi-Pens were allowed to stay in the classroom while the school contacted the district on my behalf to appeal the policy change. On Day 2 the answer was no. I ordered a WaistPal so that my son could begin to carry his own medication as permitted by Florida's Kelsey Ryan Act.

The next week I showed up with my 10 year old wearing his own Epi-Pens for the first time and a doctor's authorization to self carry. The form contained the additional instructions that the epinephrine was still to be administered by trained school personnel due to my son's motor deficiencies as documented in his Individual Education Plan. (The Kid has other medical issues that affect his muscle coordination, but not his mental abilities or "competence in the use of the auto-injector".)

I thought the problem was solved. It was Week 3 and my son's Epi-Pens were always within reach. Then Wednesday morning before 8 a.m. I received a phone call from district Health Services telling me that my son would not be allowed to self carry if he were unable to self-administer.

That was when I finally lost it and unloaded on the poor school board employee. I told her the situation was COMPLETELY unacceptable, that children have recently DIED because epinephrine was not given quickly. Their decision was ENDANGERING MY CHILD'S LIFE, and if it wasn't reversed, my next phone call would be to an attorney. Of course, anyone who could actually do anything about it wasn't in the office yet.

I decided to take my son to school still wearing his Epi-Pens. My instructions were for him to keep the Epi's hidden and not mention them to anyone unless they were needed. Although I wanted my child to be discreet I told him not to lie if an adult at school asked if he was wearing them.

My son wearing his WaistPal.

After dropping my kiddo off I started making phone calls. The director of Student Services was out for the day, so I left a message and called the Associate Superintendent responsible for that department. She was also unavailable, so I left another detailed message and was assured that I would have a response back within half an hour.

That didn't happen, so I contacted a pro bono disability attorney who had previously been suggested by a member of my local food allergy support group. Eileen Swan of Advocacy for Patients with Chronic Illness, Inc., did call me back, immediately understood the critical need for my son to be able to access his epinephrine and offered to write a letter to the school district on his behalf. Although she ended up not getting involved, I am incredibly grateful for her willingness to help and for the assistance her organization provides.

At the end of the day, the director of Student Services finally called me back. She was extremely sympathetic, mentioned that she wore an Epi-Pen herself and said that the school district's attorney would review the situation. She promised an answer by Friday.

On Thursday my son wore his Epi-Pens again. That day the school confiscated them and asked me to come pick them up.

Friday morning I received another early morning phone call, this time from the director of Health Services. She gave me the good news that after consultation with their attorney, they had come to the conclusion that my interpretation of the law was correct, and that my son would be allowed to self carry an Epi-Pen from now on. I cannot begin to describe my sense of relief.

Since the Kelsey Ryan Act gives Florida students the right to carry "an epinephrine auto-injector" the school district would not allow my son to carry two of them. Additional Epi-Pens continue to be locked in the nurse's office.

My son's school still has a caring, well trained staff. His food allergy accommodations have changed, and I hope they will be adequate. Despite the individual employees who worked hard to advocate on my child's behalf, I have learned that I can count on Pinellas County School District to do the absolute legal minimum to keep my child safe.

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5 comments:

RandomGoodsVintage said...

Im glad to hear you didn't back down. So many people I know let the schools bully them. Its not right. Glad you stood firm!

Keeley McGuire said...

Holy moley mama! First of all, BRAVO to you for standing your ground and advocating for your son. Secondly, it's a shame it's the minimum and he can only carry one BUT at least it's something and peace of mind. And that should allow them time to get the second one since the first dose is on hand. *HUGS*

hsw said...

I can't believe the poor drafting that would only allow one but not two injectors - hopefully that can be readily amended in the next legislative session. So sorry for all that you had to go through but glad that your advocacy achieved a better outcome than you initially feared.

Kathryn @ Mamacado said...

Wow, what an experience. You wonder why people are so SCARED of epipens. I guess it's due to the needle, but they should be viewed as something that HELPS not HURTS, right? I hope and pray that when my Little Guy finally goes to school that great parents like you have paved the way for us to make it an easy transition.

Robin said...

Oh my gosh, what a horrifying experience. I'm so sorry you had to deal with this but you. Thank you for letting us all know about it too, even though it makes my blood curl, I now realize there are battles that could be on the horizon that were not even on my radar.