Food Allergy Mom

Food allergies are a serious medical diagnosis. I wish so badly that they were not. I wish they could just be a mild inconvenience.

There is no such thing as a mild food allergy, even though there are lots of common misconceptions out there about food allergies.

All food allergies have the potential for anaphylaxis, which can be life-threatening. If you’re a food allergy parent and reading this, I know you know this so deeply. I know just how very much you worry.

Over the last 5 years, I’ve learned so much since my son was first diagnosed. We’ve overcome many challenges and figured out how to navigate many settings.

But with kindergarten just around the corner, an entirely new set of challenges and safety questions have popped up.

How do we manage his food allergies at school?

I’ve thought about this nonstop, particularly over the past year. I put together the 7 key questions I am asking prospective schools to determine the best fit for my son and I thought I would share them with you.

We know how important it is for everyone to be prepared should there be a food allergy emergency.

These 7 key questions are really important to ensuring that everyone is on the same page regarding your child’s safety needs. I hope they are helpful to you <3

1. Where is the Epinephrine Kept?

This is a critical question. From what I have gathered, I have heard of 2 main options that most commonly occur in schools.

Option 1

One is that a student’s epinephrine is stored in the nurse’s office. Often this is because schools will cite safety concerns about a child having access to epinephrine because of the needle injector.

One benefit to this option is that everyone knows where the Epi is, the nurse’s office.

A few concerns with this option are: How long will it take to access the epi? What if the office or medical box is locked and the key cannot be found? What happens if the nurse is not in the building? Which staff members have access to obtaining the epi?

Often, I have heard that the epis are actually locked in the nurse’s office. This would be important to know because this raises more questions about who can access the epi (who has keys) if needed and how quickly can they get it.

For me personally, I am concerned with the amount of time it would take for the staff to first recognize the reaction, then go to the nurse’s office to retrieve the EpiPen, then run back to the child to administer.

Seconds matter in a life-threatening situation like anaphylaxis. When CPR is needed, you don’t have 8 minutes to “gather the materials” and then begin. It’s the same thing here.

Option 2

The other main option is for a student to self-carry. This allows the EpiPen to be with the student which in an emergency, means the epi is right there. One concern with this is the child’s age and ability to not play with the injector. The other concern would be if the child left the epi somewhere.

One of the best ways I’ve seen for a child to self-carry is with a SpiBelt. A SpiBelt straps to the body, under clothes so the child has no need to remove it. Check them out here.

You may receive pushback from the school on this citing “safety concerns.” Here is the reality, the actual safety concern is your child not getting epinephrine in time when they need it.

Period.

Tragically, this very scenario played out at a school in Texas last month and a food allergic child passed away. Trigger warning, this is heartbreaking and gutted me for days. Use your best judgment if you should read the article or not. The article is here.

If you are receiving pushback from the school, here is an additional resource for you from FARE, the trusted source of information on food allergies regarding your child’s rights to self-carry epinephrine at school.

If you do not feel your child is ready to self-carry, another option I am exploring is having a medical backpack that is stored in the classroom. It would be out of reach of children with my child’s epi in there, and then the backpack moves with the teacher from class if the children are going to recess or specials. The only issue with this is the backpack being forgotten.

As you can see, this question brings up a lot of other questions, but it is critical to developing the best emergency care plan for your child at school.

Definitely make sure you have a clear answer for this question.

2. Who Has Access to the Epinephrine?

One of the things I keep hearing is that many schools are locking up the epinephrine, usually in the nurse’s office.

I am completely opposed to this. There are too many logistical issues that can go wrong and you lose precious time. Things like, where’s the key, where is the person who can get into the room, etc. all can make an already serious situation actually dangerous because we’re taking too long.

This is a critical question to ask. If the answer is, “Only the nurse has access” then the follow up question is, “What happens if the nurse is not there?”

There should be more than one person who knows how to and is able to access your child’s epinephrine should it be needed.

If a child self-carries, then who knows where the child keeps the epi? Does this staff member understand how to help the child administer it in an emergency?

I was speaking with a current kindergarten teacher and her advice to me for my son was to advocate that every adult who comes into contact with my child at school should be trained on his epi and know where it is.

Every single one.

Who has access to your child’s epi at school?

3. Who Has Permission to Administer Epinephrine in an Emergency?

This is different than who has access. The purpose of the question is to confirm who actually can administer the epi should it be needed.

You would think that it is implied that whoever has access would also be able to administer it.

I thought that too.

I was at an event trying to get my son involved. Several staff assured me that all of the volunteers are both CPR trained and trained on administering EpiPens. Then I was told to ask the lead volunteer any questions.

When I spoke with the lead volunteer, we were talking about the emergency process and she then told me that the volunteers are actually not allowed to administer the epi, only the paid staff are.

My jaw took a bit to come up from the floor.

This obviously does us no good in a situation where the paid staff person isn’t available in that moment.

Whether or not this information was true, or perhaps this lead volunteer was mistaken, there was clearly confusion among the staff about who could actually administer the epi.

An emergency involving your kiddo is not when you want people confused about the plan.

Clarify who can actually administer the epi and I would also encourage you to have that written in either a Health Plan with the school or a 504 plan.

4. What Training Has The Staff Received?

It is helpful to know what exactly the training has been for administering epinephrine. Was it a 3 minute video? Was it a full day seminar? How often is the staff trained? How recent was the last training?

Were the staff trained on different epinephrine injectors or just one type? I have found that many people are unfamiliar with Auvi-Q which is my son’s injector but have been trained on the traditional EpiPens.

Here is a link for more information on the different epinephrine injectors from FARE, the trusted source of information on food allergies.

At the school I am looking at for my son, they have a Medical Emergency Response Team (MERT) that key staff are a part of at school. They are evenly distributed throughout the campus so that a member of a MERT team could quickly get to any student.

They all have different roles so covering calling 9-1-1 is already a protocol per their emergency response training.

What emergency training and protocols are in place can be really helpful in developing the right plan for your child at school.

5. What Happens When There is A Substitute Teacher?

This is a circumstance that easily can be overlooked. You build a great relationship with the teacher, you know the school’s emergency protocols, the teacher knows your kid, and then one day there is a substitute.

What is the plan for when there is a substitute? I highly recommend this be included in any written health plan or 504 plan for your student.

Who is responsible for prepping the substitute teacher? Is the substitute trained on epinephrine? Is there another staff member who would be designated for that day like a classroom aid or tutor who is typically there? Will you be notified when there is a sub?

For example, Katie was a Kindergarten teacher for many years. Whenever she needed a substitute, her partner teacher in the same grade level had a binder of critical information for the sub. This information included emergency protocols for any child with specific medical needs.

Having a plan in place before this happens can be very helpful so that you can be proactive, not reactive.

6. Is the Nurse In the Building Daily?

This is something that surprises a lot of parents, but Katie and I are familiar with this having worked in the schools. The nurse is NOT always in the building.

In many districts, it is quite common for the nurse to rotate between buildings within the school district. This could be for a variety of reasons, but don’t assume the nurse is always in the building.

Clarifying this is really important, especially if your care plan includes storing your child’s epinephrine in the nurse’s office. If the nurse is not always there, what is the plan for when the nurse is in another building?

Some schools still have clinic aides that are in the school full time, but work directly under a rotating school nurse. Other times, one of the office staff members is trained in emergency medical protocols for when the nurse is out.

It is so important to understand how this scenerio is set up at your child’s school.

And again, I encourage you to document this in writing with the school .

7. How have you Prepared the Staff To Recognize Anaphylaxis?

Responding to anaphylaxis is one thing, recognizing it is another. One of the key pieces to responding to an allergic reaction is RECOGNIZING it is occurring in the first place and then quickly implementing the emergency care plan.

I’ll say it again. Responding is different than recognizing.

Is the staff familiar with the signs of an allergic reaction?

One resource that we highly recommend is from FARE, the trusted source of information about food allergies and it is their Emergency Care Plan. On it, it has pictures with descriptions of symptoms to look for and when to administer epinephrine.

This emergency care plan is also a great one you could review with your allergist ahead of time, and then present to the school as the plan you wish them to follow for your child’s specific needs.

Written Plans

I’ve mentioned having written plans with the school. I highly recommend having a care plan in writing. It keeps everyone on the same page and also holds everyone accountable.

For more information on working with the school and written plans, check out our post, 13 Back to School Food Allergy Tips.

I hope these questions are helpful to you as you create a care plan that works best for your child’s needs.

As always, we are here for you, cheering you on. 💙

-Lauren