School Nurses -- So Few but So Valuable

by Kelley Lindberg


Do you remember being young, getting sick at school, and going to see the school nurse?

That’s not an experience most of our children will ever have.

As the VP for the Utah Food Allergy Network (UFAN), I spent two days last week with a table at the Utah School Nurse Association’s annual convention, meeting Utah’s remaining school nurses and talking with them about food allergies. As we chatted, I asked them how many schools they were responsible for.

The numbers were frightening.

A handful of nurses worked in only one or two schools – most of them charter or private schools. Most of the public school nurses would blink back the hysterical look in their eye, smile bravely, then tell me how many schools they had under their wing – 6, 8, 10, or even 23. One man told me he was a Physician’s Assistant in a clinic, the sole medical provider in his entire rural county, and he’d contracted with that county to be their only school nurse.

The school nurse role is no longer the first line of defense for our children while they’re at school. In many ways, the school nurse has become strictly a consultant. They try to train teachers and administrators to watch for signs of flu or chicken pox. They help make sure action plans are in place at the start of the year for kids with diabetes, heart conditions, asthma, or food allergies, and that the staff understands how to implement them. They remind administrators about vaccination requirements.

But it seems like very few get to interact directly with our children anymore.

That’s a sad but unavoidable result of our constant education cut-backs.

Understanding that we’ll probably never reverse the trend of squeezing funding for basic teacher salaries, let alone school nurse funding, what can we parents do?

First, we must recognize that we are our children’s strongest and fiercest protectors. Although the school nurses would do more if they could, we cannot depend on anyone else to champion our children’s health, so we must be willing to do it ourselves.

We have to educate ourselves on what our child’s health concerns really mean, how to effectively keep them safe, and how to balance that need to keep them safe with the needs of the other 25 or more kids in the class.

We must shoulder the responsibility for training the teachers, lunchroom staff, and office staff to recognize food allergy reactions and administer EpiPens, and work with them to ensure the entire experience feels as “normal” as possible so that no one – on either side of the table – feels ostracized or bullied.

We must work with our own allergists to create a workable medical action plan. (If you don’t have one, use FAAN’s food allergy action plan, which is in common use by many allergists.)

And we must find out who our school nurse is, even if he or she is only in our school for one day a week or less, and work with that nurse, making sure we’re both on the same page and not working at cross purposes.

Because even if the school nurses are spread far too thin across far too many schools and miles, they are still trying their very best to build safety into our children’s school experience.

I was delighted – and a little surprised – at how crowded my Utah Food Allergy Network table was at the convention. At every break, nurses would stop and talk to me about food allergies, asking questions like “Is coconut a tree nut?” or “Do the foods have to be ingested to cause a reaction, or is skin contact bad, too?” They were sharing stories of food-allergic kids they had and some of the policies they’d put into place to help them. They were asking why food allergies seem to be growing so much more common.

And just about every single nurse I talked to signed up to join our UFAN school nurse email list, so that we could send them updates about things like food allergy guidelines, new legislation, or other information that could help them do their herculean jobs more efficiently.

They care. They work extremely hard. And they want to learn more. We parents can help them, and they will do what they can to help us.

Thank you, school nurses everywhere.

Why Are Voluntary Guidelines Useful?

by Kelley Lindberg


On January 4, 2011, President Obama signed into law the Food Allergy and Anaphylaxis Act (FAAMA), which directs the federal government to create national, voluntary food allergy management guidelines for schools. It also provides for school-based food allergy management incentive grants to help public schools implement those management guideliens.

This is great news. Right now, every school, every school district, and every state is on their own when it comes to forging food allergy guidelines for teachers and administrators to use in those schools. That means a whole lot of wheels being reinvented from scratch every year – and, more likely, a whole lot of wheels that will never even get built because schools are just too busy and financially strapped to take the time to start something that sounds that complicated.

By tapping a coalition of groups including the Food Allergy and Anaphylaxis Network (FAAN), the National Association of School Nurses (NASN), and the National School Boards Association (NSBA) to create these national guidelines, this new law will make it so much easier for all of those thousands of different school districts to use or adapt the guidelines, instead of starting from scratch. The easier something is to create, the more likely it will be to 1) be created, and 2) be supported and followed.

But many people in the food allergy community are upset to hear that the guidelines will be voluntary instead of mandatory.

For now, voluntary is a huge step forward, and will likely garner much more support than mandatory would have.

Chris Weiss addressed this issue in his FAAN blog. Read his take on the situation in his posting, “Reflecting on FAAMA.”

In addition, Michelle Fogg, the president and founder of the Utah Food Allergy Network (UFAN), wrote a response to a concerned parent, explaining why voluntary guidelines are a vital, useful, and necessary step, even though they aren’t mandatory. Here is what Michelle says:

Mandates are nearly impossible to pass in government and receive huge opposition no matter what the subject is. I can't speak directly for FAAN as to their motives for 'voluntary' BUT I do know that no 'one size fits all' approach would be applicable for every state and every school. The States don't want big government coming in and telling them what and how to do things. In my opinion, having a national set of guidelines for states to use when creating their own would give more uniformity generally and would save many states from having to create guidelines out of thin air. At least now there will be credible uniform information available to any state or school district wanting better management of food allergic children. It is up to us as citizens to make sure the powers that be know we want statewide guidelines in place...again these will be voluntary as no one approach is innately best for all. I have already spoken with the UT State School Board and Office of Education and the moment I said "voluntary guidelines" NOT a mandate, they began to listen and show interest. I understand your frustration because as a mother we think this should be a no brainer - a must have!! I think it will be standard in the future but unfortunately there is political red tape and it is going to take us as parents and a community speaking up and demanding it from our individual schools, districts, and representatives. Watch for info to come soon on how you can help support UFANs efforts to get statewide guidelines created and the information disseminated.

...I am currently engaged in the battle to get the State to mandate insurance coverage for medical formulas for EGIDs and it is crazy trying to get a mandate to go through (this is our second attempt)! The FAAMA took almost eight years to pass and had to be rolled into the larger Food and Safety Bill to even make it through. I'm happy because I think it's a victory to have any guidance out there and hopefully many will take advantage of it. If they don't then we'll have to demand it, right?!

Thanks for sharing your feelings with me,

Michelle Fogg
President & Founder
Utah Food Allergy Network
http://www.utahfoodallergy.org/

Highlights from Dr. Jones' Talk, Part 1

At our July UFAN chapter meeting, we were fortunate enough to have Dr. Douglas Jones come speak to our group about the latest food allergy news in testing, treatments, and research. As the only full-time board-certified allergist in Davis County, he discovered when he opened his practice almost a year ago that people in this area have a dire need for accurate, up-to-date information about food allergies. Our group was no exception – we may be more well-informed than many of the people he sees, but we were still anxious to learn more, and he obliged beautifully!

Dr. Jones covered a wide variety of topics for us, and delved into both the science and the regulations that affect research and testing. He covered so much that I’m going to mention a few highlights from his presentation this week, and more next week.

How early can children be tested for food allergies? Dr. Jones said there’s no specific limit on when a child can be tested. It’s more important to look at the child’s and family’s history of reactions, what they want to learn, the family’s needs, and so on. Theoretically, you can test anytime if the child’s history really warrants it, but it’s a case-by-case decision. Dr. Jones recommends retesting every 6 to 12 months for younger kids, less frequently for older kids.

Should you avoid common food allergens when pregnant or nursing to avoid causing your baby to have allergies? Dr. Jones doesn’t feel there’s enough good data to base a decision on. He says it’s probably more important to continue to eat a healthy diet and not worry so much about the allergens in it, because the fetus needs the nutrition. He stresses to mothers: “It’s not your fault!” As for nursing, there is some evidence to suggest nursing for 4-6 months may be beneficial. As far as mothers avoiding foods while nursing in an effort to try and prevent food allergies, there is no data to support this. If you can identify a pattern with nursing and reactions, then that’s one thing, but avoiding things to try to prevent allergies is not recommended. He says it could be more likely that children develop food allergies through accidental skin contact (Uncle Fred forgot to wash his hands after eating those peanuts) rather than through breast milk. Until there’s more data, it’s another case-by-case decision.

Eczema: Apart from Dr. Jones’ discussion, the group had a general discussion about eczema, and why so many pediatricians don’t seem to realize that most cases have an underlying root cause, and most often that root cause is food allergies. Dr. Jones didn’t have an answer for why this is unrecognized or ignored by primary care doctors. But, we all know people whose children have suffered for years with eczema, and their doctors have simply prescribed steroid creams and sent them away, before the parents finally went to an allergist and had their children tested. Often those children’s skin is clear in a matter of a couple of weeks after eliminating the offending food – often milk or eggs – from their diet. It's such a simple thing to test for and cure, yet these children suffer for years sometimes because their doctors don’t know or won’t accept that food allergies could be the cause.

For More Information: Dr. Jones recommended a book called Food Allergy Survival Guide, by Vesanto Melina, Dina Aronson, and Jo Stepaniak.

Those are some of the topics we discussed, and we all learned a tremendous amount. Next week I’ll write about more highlights from his talk, including blood serum testing, the latest news on the Chinese herbal study, and more. Many, many thanks to Dr. Jones for coming to share his knowledge with all of us. If you want to contact his office for an appointment, here’s his information:

Dr. Douglas H. Jones, MD
Rocky Mountain Allergy, Asthma, Immunology
1660 W. Antelope Dr ., Suite 310
Layton , UT 84041
801-775-9800
www.RockyMountainAllergy.com