Wednesday, April 24, 2013

Planning for the School Year with Food Allergies: Getting Started

I know, I know, we have our hands full just finishing this school year. Or maybe your little one is getting ready to begin kindergarten in the fall. That's a long way off, right? Not for those of us managing food allergies at school. Begin the conversation now.

Why I am stressing you out when it's not even May yet? I'm trying to save you some stress later and I speak from experience as someone who spoke to the principal in August back in the day before my daughter started kindergarten. The principal was hard to hunt down, especially before the school offices opened. Not to mention allergy offices.  Offices get crowded and allergists are busy filling out paperwork for their many food-allergic patients. Don't wait until the last minute.

Many parents are apprehensive to make that initial contact with a school because they aren't sure how they will be received. Or maybe a parent is simply unsure how to make the contact. My advice: just do it. Don't worry, in this day and age, you are not alone no matter what a school might tell you. They've likely heard previous food allergy requests. Be firm, knowledgeable and calm. It goes a long way.

Here's how you get started:

Who do I call?

Begin with the school's health office. Tell them you have a child with life-threatening food allergies and ask them what forms you need to fill out for a child to have and/or carry medication at school and any other forms they might require for medical purposes. It is also a good idea, especially at a new school, to place a call to the principal, introduce yourself and your child, and ask for details on the school's food allergy management practices.

Next, call your child's allergist. Have them fill out a Food Allergy Emergency Action Plan for your child; remember, most schools want this renewed each year. If things haven't changed for your child's condition, the doctor will have to fill out the same instructions, but make sure they are dated currently. If you plan to have a 504, the doctor will need to provide detailed background paperwork. Schools require up to date info, especially if any accommodations are to be made for Individual Health Plans or 504s, or for students to be allowed to self-carry medications like epinephrine. Your materials must be dated the current school year or they will not be honored.

You will also want to identify and call your district nurse. They are generally the people who will be issuing and signing off on medication forms and emergency plans. Get to know them and be sure to ask them what if any additional forms you might need or actions you need to take for your child's health and safety.

Know your facts, know your rights.

One piece of advice before you contact anyone: Know your rights. For example, if you want your child to have a 504 Plan (this refers to a section of the Americans with Disabilities Act and is a binding legal document that protects severely allergic children at school) then know that you must be evaluated for one if you request it. Many districts have a Special Needs Coordinator that you can speak to. If not, call the principal or if necessary the superintendent of schools. Here is an excellent source of 504 Plan information from the Arizona Food Allergy Alliance web site.

Another right that is frequently questioned is the right for a student to carry and/or have access to an epinephrine auto-injector in the classroom. Many states have laws that formally protect this right; here is a link that shows you where your state stands. Just because the law may not exist, though, doesn't mean your child can't have their medication nearby at all times. It just means that you may have to get an additional note from your doctor and be a little more assertive about it. What if your child is too young to self-carry and needs an adult to help? Check this recommendation from the American Academy of Allergy, Asthma and Immunology:

 "For younger children, the epinephrine device should be kept in the classroom and passed from teacher to teacher as the child moves through the school (e.g., from classroom to music to PE to lunch)." 

Click the link to see the entire document; it has excellent recommendations for all ages of allergic students. Thanks to reader Irene R. for sharing this document on my Facebook page.

One more word about a child's access to medication. I can't tell you how many times a parent contacted me to say that their school told them the epinephrine auto-injector "had" to be kept in the school office and not with the child in the classroom, or with their child at "specials" like PE or Art. No, no and no. That does not work. If an epinephrine auto-injector is to be effective, it must be administered quickly in case of emergency.

Some people appear to believe that auto-injectors have magical properties, kind of like Harry Potter's wand. All you need to do is have it somewhere in the building and the magic will happen. You have to be clear that this is not the case--just being in the building is not good enough. Medication has to be at arm's length to be of any use. Your allergist can help you with this; mine wrote a special medical directive and it really helped get the message across.

I just read about a mom who went to replace her daughter's epinephrine prescription and the school could not locate her child's medications for EIGHTEEN minutes. To be blunt, that's life or death if you are in an emergency. Don't listen to the "we keep it in the school office" or "it's in a locked cabinet" baloney. No one can deny your child access to life-saving medication.

The last thing I want to do is get any of you on the defensive before you even know how the school handles allergies. Please don't assume the worst before you call but DO be prepared with facts, documents and a cool head.


Here is a link to many back to school resources that will be helpful as you get back to school.

For training modules that schools can use, there are many new and wonderful resources. Two of my favorites are from Allergy Home, a site run by leading pediatric allergists; this module is free. You should also check out EpiCenter (TM) Medical, a new and easy-to-follow educational training module that explains anaphylaxis and describes treatment and prevention. Click the embedded links to find out more.

I wish you all a very smooth transition and preparation into school! Get started now and you'll have a much better summer and safer new school year.


irideout said...

Thank you for this great post!

I want to second your recommendation regarding knowing who the "district nurse" is. In our town, there is a "School Nurse Leader" who works for the town's Board of Health. We had no idea this person / position existed, but thankfully one of my husband's colleagues told him about it. In fact, in a roundabout way, someone else told the School Nurse Leader about our issue, and SHE reached out to US! So while the school nurse told me "no EpiPens in the classroom" and the principal said "I'll think about it", the School Nurse Leader said, "Definitely you can have EpiPens in the classroom passed teacher to teacher for specials." I haven't gotten the official "okay" from the school yet, but I am definitely less anxious knowing that this School Nurse Leader is on our side.

danal28 said...

Hi Jenny,
My daughter will be going to a new school in September. How to approach and where to begin with a school that is: A.) a private school....504's are not applicable; and B.) The school is behind in food allergy knowledge (i.e. chef in dining hall asked if pine nuts are actually nuts). I am considering purchasing EpiPen's program for the school while the Allergy Action Plan will be with nurse, dorm and cafeteria. My daughter always self carries as well. Any other advice on the approach to take with a school admin that's new to us?

Anonymous said...

Really glad to find this blog, thanks. You might be interested in this article -

Jenny said...

Danal28, I am not personally familiar with boarding school/college experience, but I do have a link for you. In a commuter elementary school, middle school or high school the issues we tackle are somewhat different as we do not rely on food services for meals and our kids don't live on site. However, some things are in common at all schools. Please communicate with your school and continue to offer them resources, such as the training module. Communication and interaction is key, to make sure everyone understands. The chef concerns me, too. At the end of the day, we have to evaluate if any school can provide a safe environment for an allergic child. I hope that you can educate your school using some of the resources available so that this can happen. All the best to you!

Amy said...

I was reading this article when my son's new school district called me back! Too funny!

I have a pinterest board for tree nut allergies and I pin a lot of your articles. If you search for peanut or tree nut allergies on pinterest you'll actually find a lot of pins and boards!

I'm mentioning it because you typically have some sort of graphic on your posts, but if you would put a description across that image it would work much better on pinterest, and would probably gain you some repins and new followers because people would instantly see useful allergy info instead of just a stock picture with a description on the pin.

This blogger does a great job on giving a good graphic for potential pinning, if you want an example! It's a sewing blog, but every time I pin from her I end up with a clear understanding of what my pin is at a single glance.

Your blog and book are a HUGE help to me - thank you!!

Jenny said...

Hi Amy, Thanks for your kind words about my book and blog. I so appreciate that feedback, it means the world to me.

Regarding Pinterest, I'm still kind of dabbling there, but from what I know I can't put my web site tag on an image I don't own--for example, I pin a lot of articles from news sources. Those images don't belong to me, so legally I can't place my site tag on images I don't own. For those types of pins, what I can do is put a description that includes my blog name so that Pinners know where the pin came from or who pinned it. Would that help? In the case of photos I own, I will look into putting my web site tag on those. I wish I had more time to be on Pinterest as I do enjoy it. Amy, do you and your friends spend more time on Facebook or Pinterest? Let me know and thanks for being a loyal reader and pinner! :) -Jenny