Kids Food Allergies Blog

School’s out for summer.  So, why am I spending so much time thinking about school?

Last week — I had my first meeting with the principal and kindergarten teacher of my daughter’s new school.  I was pleased by how productive this meeting was.  I left reassured that the school would make reasonable accommodations in order to provide a safe environment for her.

My husband recommended that I post the discussion outline that I prepared that set the stage for this school meeting, in the event that it might help someone else.

Meeting Objectives:

1. Prevent food allergy attack by minimizing the risk of allergen exposure
2. Recognize signs/symptoms of food allergy attack and be prepared to execute emergency medical plan
3. Create safe environment in which food allergic child can have normal school experience

Wish List:

1. Minimizing risk:

A. Understanding the allergens:  What are they?  What range of reactions can occur based on contact or ingestion?
B. handwashing - entering school and after eating
C. nut-free classroom (since kindergarten students have snack in the classroom)
D. food-free art/science projects
E. principal/teacher letter to educate parents

2. Executing Emergency Plan

A. How widely distributed?
B. How knowledgeable about food allergies are teachers/staff that are responsible for FA child? Are they trained to administer epipens in an emergency?
C.  What about substitutes?
D.  Where are epipens stored?  If stored in nurses office (not classroom), how accessible is this office?  What happens if office closed?  Is emergency medicine brought on playground or on field trips?  Who is in charge in these environments?

3. Creating safe/normal environment

A. Birthday celebrations and class parties - predictable schedule with advance notice so parent can provide safe snack for FA child
B. Desire to keep child safe without putting any additional limitations or restrictions (other than those recommended by her allergist) that make FA child feel excluded from group activities
C. What are the bus procedures/protocols?  Can child self-carry epipen?  Will bus driver carry epipen?  If answer to both is “no” - how can FA child be kept safe on bus?

I hope this is helpful.  If I’ve forgotten something — or if you’ve have had positive/negative experiences in meeting with school officials that you think would be helpful to share — please  leave a comment.

I just found a link to a very interesting podcast.  Click this link to see a video introduction and hear the podcast of Aaron at AllergySmart.net interviewing veteran food allergy mom and food allergy cookbook author, Linda Coss.  (Sidenote: Her book, What’s To Eat: The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook is a wonderful reference.  I bought it soon after my daughter’s allergies were diagnosed and still treasure it years later.)  The topics covered in the podcast include:

• What aspects to cover when sending kids off to school with food allergies
• How to engage with the other parents at the school about food allergies
• Dealing with family members about their food allergy awareness
• Educating your child about their food allergy condition without getting them stressed out and turning them into a basketcase
• Banning nuts in schools, yes or no
• Cooking with food allergies and reduce food choices

I thought it was interesting to hear the perspective of a mom who has lived through all these issues (her boys are now 15 and 17 1/2).  Hope you find it useful as well.

As parents of food allergic children, we need to walk a fine line between advocating to keep our children safe and alienating people whom we need as allies by seeming too extreme.  As I prepare to meet with the principal of my daughter’s new school, I wonder just how much I can ask from her new principal, teacher, and the parents of her classmates.

I am reminded by one of my readers how asking for too much can border on the absurd.  Richard R posted this provocative comment below:

I’ve run into absurd extremes before. Our daughter’s pre-school sent out a letter that since they had a child at the school who had a sibling with a nut allergy who WASNT at the school, no child attending school would be allowed to eat peanuts at HOME, let alone at the school. In other words, No peanuts in 3 degrees of separation from the allergic child.
There was an outcry and it was rescinded. It’s stuff like that that makes the issue seem silly and overblown.

Richard raises an interesting point.  Based on the facts Richard presents, I would argue that the parents aren’t helping their child, and they certainly aren’t helping our broader cause.   I’d rather go the humbler route.  This is what I’m asking for.  Please:

1. don’t allow children to bring or eat peanuts in the classroom;
2. have children wash hands after eating;
3. don’t do art/science projects which contain dairy, peanuts, tree nuts, or eggs; and
4. try to provide advance notice of birthday celebrations so that we can provide a special treat for my daughter.

But what seems perfectly reasonable to me may seem totally outlandish to others.  That seems to be Trace Adkins’ experience.  We learn from Celebrity Baby Blog that when asked whether people are sensitive to the severity of his daughter’s allergies, Adkins says:

People seem to not really care.  I was doing a radio-show interview the other day, and a listener called in and said, “I was told that I couldn’t bring something into my kids’ school because other kids were allergic, and that’s infringing on my freedoms.”  I thought, “You idiot.  Bring something else.  Are you seriously suggesting that you should have the freedom to kill my kid?”

If you have a child entering kindergarten (like me), or are changing schools, I found a really helpful website, Safe@School Partners, that offers a discussion guide for approaching food allergies with those responsible for keeping your child safe at school.   Of particular interest to me was the sample letter from the principal to parents of your child’s classroom.  It would need a bit of tailoring to meet our circumstances, but I think strikes the right tone.

Through this blog, I have expressed concern over schools and camps which discriminate against food allergic children or set policies that compromise their safety.

But recent news events raise an issue I fear even more: kids bullying food-allergic kids.

In Lexington, Ky ., an eighth-grade student is facing felony charges for allegedly sprinkling peanut butter crumbs into the lunchbox of a student whom he knew to be peanut-allergic. His case will be tried in the juvenile criminal justice system.

ABC News reported about a 14 year-old in Mastic, N.Y. who has received numerous food allergy-related threats from peers — bullies planning peanut parties at lunch to make her face blow up, bringing peanut butter sandwiches to make her leave their cafeteria table, threatening to put peanut butter on balls in gym class, opening up peanut butter cups in the back of the classroom. These are my worst nightmares! To make the situation worse — this abuse isn’t coming from strangers. It’s coming from kids she grew up with — had playdates and birthday parties with — who think her allergies are made up.

Her parents have fought back by filing a 504 plan, under which her food allergy is treated as a disability and certain safeguards are put in place to keep her safe. And if kids bully her, it’s considered a discrimination against a disability. But since these threats are verbal threats rather than physical assault, they are harder for teachers to recognize and enforce consequences.

I just don’t know how to keep my daughter safe from food allergy bullies. If I could get away with sending her to school looking like this, I just might give it a try.

Question for those of us with food allergic kids in public schools, or about to enter public schools: Is the passage of H.R. 2063 a reason to celebrate? According to a bill summary, H.R. 2063, The Food Allergy and Anaphylaxis Management Act of 2008, directs the Secretary of Health and Human Services, in consultation with the Secretary of Education, to develop a voluntary policy for managing the risk of food allergy and anaphylaxis in schools.

H.R. 2063 requires the Secretary of Health and Human Services to develop and make available to local educational agencies a policy to manage the risk of food allergy and anaphylaxis in schools to be implemented on a voluntary basis only. Directs that such policy address: (1) a parental obligation to provide the school with information regarding a student’s food allergy and risk of anaphylaxis; (2) creation of an individual health care plan tailored to each student with a documented risk for anaphylaxis; (3) communication strategies between schools and emergency medical services; (4) strategies to reduce the risk of exposure in classrooms and common areas; (5) food allergy management training of school personnel; and (6) authorization and training of school personnel to administer epinephrine when the school nurse is not immediately available.

The Food Allergy and Anaphylaxis Network (FAAN) considers the passage of this bill , sponsored by Rep. Nita Lowey (D-NY), to be a “wonderful first step to ensuring that the 2.2 million school-age children with food allergy are safe at school.” They further claim that, “If passed, FAAMA will provide schools across the country with uniform guidance on how to create appropriate management and emergency plans for children with food allergies.”

While I laud these objectives, I’m skeptical that this bill will accomplish these goals.

1. The bill is voluntary. In section 5, “Nothing in this Act or the policy developed by the Secretary under section 4(a) shall be construed to require a local educational agency or school to implement such policy or guidelines.” That’s problematic. If schools don’t want to work with parents to implement food allergy action plans for emergency situations, that’s OK? And, a camp can reject your child because of his/her allergies (or refuse him or her to bring an epi-pen to camp)? I share the sentiment of the Breeding Imperfection blog that HR 2063 “is not nearly as interesting” because, frankly, this legislation will not do anything. But it would be really helpful if some legislation could be implemented that would. As she writes, “Mothers like me already do the informing and educating of the schools. Many of us start from scratch, with wholly - and dangerously - ignorant educators … With parents carrying the bulk of the burden, it would help a lot to see this process normalized a bit.”

2. State law supercedes federal legislation (see section 4.2.c). This is a variation of point 1 — but if state and local laws are more lax than the federal guidelines outlined in this legislation (or by DHHS) — then food allergic children are no better off than they were before the passage of this bill. It is precisely in those jurisdictions with policies that disadvantage food allergic students who most desperately need strong federal legislation to protect their safety and rights.

3. There is no money behind it. When this bill was first introduced (April 26, 2007), there was an appropriations authorization provision ($30,000,000 for fiscal year 2008 and such sums as may be necessary for each of the four succeeding fiscal years). This provision was stricken from the version that passed the house April 8, 2008. Not that this matters that much — the power is in appropriations, not authorizations. Actually, taking the appropriations down to zero makes sense since the bill is completely voluntary. If this bill were to make a difference, it would need to be mandatory and have money behind it.

4. I’m really glad to live where I do. I haven’t yet met with my daughter’s principal, but where I live (in Fairfax County, VA), I am optimistic. There seems to be a fairly comprehensive county-wide food allergy policy, and a highly organized mechanism in place for managing food allergies. They post several allergy/anaphylaxis responsibility checklists, which I found interesting:

• Responsibilities of the Parents or Guardians of a Student with Food Allergies/Anaphylaxis
• Responsibilities of the Student with Food Allergies/Anaphylaxis
• Responsibilities of the School Administration
• Responsibilities of the School Public Health Nurse
• Responsibilities of the Classroom Teacher
• Responsibilities of the Food Services Manager
• Responsibilities of School Transportation

The bill goes to the Senate next. We’ll be watching closely.