October 1, 2012

Food For All: highlights from one district's experiences with food allergies

I had the privilege to attend a parent education forum put on by San Ramon Valley District's Parent Support Network, a group that provides support for families whose children have a special need.  This was the district's first education night concerning food allergies, a topic that concerned parents proposed to the committee. 
Kyle Dine opened the evening by performing his song, "Never Keep a Reaction a Secret".

Parents such as GAW reader, Lori, helped to pull together a panel of speakers.  The panel was comprised of two parents of kids with food allergies, a principal who collaborated with parents to create an allergy-friendly campus protocol, middle school counselor, district nurse, local allergist and school parent, and food allergy musician and educator Kyle Dine.  The special needs liaison solicited parents to email in questions the day before the panel discussion and, with that, the direction and flow of the night was determined.

I was impressed and inspired by the efforts of the San Ramon community and those who serve families that manage food allergies.  I would be lying if I didn't tell you that part of me dreamed of moving to the district~

Here were my major takeaways:

Kyle Dine, food allergy musician who has multiple food allergies:
-Shared that the hardest aspect of growing up with food allergies was the social part.  He never wanted to feel like a burden to parents or friends.  He just wanted to be treated like any other normal kid.
-As a child, his parents trained him to advocate for himself.  He carried his own EpiPen, was given the responsibility of ordering his own food and asking all the necessary questions about ingredients and possible cross-contamination.
-Believes the most effective way to educate families about food allergies and keep food-allergic children safe at school is through classmates.  Children are empathetic and "really get it" when food allergies are explained.  Children do not want their friends to be hurt.  They will often go home and ask their parents not to pack nuts, milk, or other allergens that would harm their food-allergic classmate. "I have never once heard a child say, 'Eating peanut butter is my right.' "
-Shared that the most powerful and effective communication to a class about a student's allergies was a personal letter, not written by the parent but coming straight from the allergic student.

Dr. Matthew Lodewick, allergist:
-Explained that any given exposure to an allergen can trigger anaphylaxis.  There is no evidence to support that there is a progression of intensity in reactions.  Reactions can look different each time so if someone asks, "So just how allergic is your child?" tell them a reaction can be anaphylactic.

-And because any reaction can lead to anaphylaxis, Dr. Lodewick says, "My preference for the first medication administered is always EpiPen.  Then you can give Benadryl."

Connie, mom of a milk/nut-allergic child:
-We as parents are our children's strongest advocates.  Always speak up.
-Working together is key to building a safe environment.  Keep an open mind and understanding about the various and many non-allergy needs that staff also have to juggle, and be willing to do your part and be willing to compromise.
-Do not ban foods but teach kids to hand-wash and wipe mouths after all eating.  Educate kids about your child's food allergies through a classroom presentation (check out Michelle R's) and class Q&A with your child.
-Shared that she accidentally injected herself with the EpiPen Jr. while training another adult.  "It was the best thing that I did," she confided, because she got to experience the side effects firsthand.  Connie explained that she could feel her heart racing a bit but thought it was just the adrenaline rush of realizing her mistake.  After about an hour, she could hardly keep her eyes open.  The combined symptoms were mild and short-lived and she would not hesitant to administer the medicine to her daughter at the first signs of any reaction.

Brian, dad of a child with milk allergy and Celiac's Disease:
-Encourages parents to talk about their child's food allergies at Back To School Night (with the teacher's consent)
-Ask parents to contact you if/when they are going to bring in a class treat so that you may suggest or bring in a safe alternative for your child.  Assure classmates' parents that you are not asking that their family bans foods from school. 

Shawn Wells, Bollinger Canyon Elementary principal:
-Has worked with a dedicated group of parents to create an allergy-friendly community at her elementary school
-Open communication between parents, principal, nurse, and teacher is critical for creating a safe and inclusive environment for children with food allergies
-Bollinger Canyon introduced an allergy pals table.  Kids are free to eat there if they do not have any of the allergens in their lunch.  The table was monitored by a paid staff person.  Those who have finished eating any offending allergens may move to the table only if they have washed their hands and wiped their mouths.  While being free of unsafe foods, a big draw of this table is that friends across grades or from different classes may choose to sit here as long as their lunches are safe.

Julie Damgen, middle school counselor:
-Have a meeting with the middle school counselor to make sure all allergy information is passed on from your elementary school
-In San Ramon middle schools, there are some classes and electives that are food-based.  Again, notify counselors ahead of time so that accommodations can be made.

Sharon Dodson, district nurse:
-Contact nurse and teachers in the weeks before the new school year begins to educate about your child's allergies, past reactions and symptoms (though keeping in mind that new symptoms may occur at any time), and protocol.  School staff appreciate to know these details ahead of time so that accommodations and safety measures are in place from day one.
-All district teachers are trained on how to administer an EpiPen Jr. and EpiPen.  However, a teacher has to also be willing to administer the EpiPen when needed.  It is also important for staff to be trained with CPR.

Brian Hom, organizer of the Bay Area FAAN Walk and father of BJ Hom who died of anaphylaxis to peanuts:
-Echoing Dr. Lodewick's warning, Brian shared that his son BJ died of anaphylaxis without ever having any previous anaphylactic reactions.  Brian wondered if a proactive district such as San Ramon was working on stocking its schools with emergency sets of EpiPen auto-injectors.  Schools can take advantage of current California Ed Code 49414c and Mylan Corporation's generous offer for free EpiPen twin packs so long as they complete the paperwork and have a general prescription from a physician.

1 comment:

  1. Thanks for posting this. I found it to be educational even though we don't live in the district. I like how Kyle Dine's parents taught him to be his own advocate -- I'm going to keep this in mind as my child gets older.