Responsibility With Age: Have Your Child Teach About Food Allergies

Responsibility With Age: Have Your Child Teach About Food Allergies

As a parent of a food allergic child, most of my time is spent attending to the physical and mental necessities of caring for a child with food allergies. Sometimes we can forget that the psychosocial health of a child is just as important.

Toward the end of fourth grade year, we began to prepare our son for the increased independence of middle school (6th grade). In doing so, we started with lunch – it was time to relinquish the ‘Tony Soprano’ lunch table set up that he benefitted from since second grade.

The ‘Tony Soprano’ lunch set up is a tip of the hat to my Italian heritage where a food allergy safe desk surface is placed at the head of a lunch table allowing him to sit with his friends of choice, rather than at the food allergy table. For our son, this removed the worry and pressure of lobbying daily for a friend to agree to sit at the food allergy table with him. He very much disliked having to ask someone every day to sit with him; made him feel like he had to beg people to sit with him.

Transitioning to the regular lunch table would undoubtedly cause some chatter amongst his classmates who had grown accustomed to his seating arrangement. To avoid our son from being inundated with questions, his teacher made an announcement to the class, portraying it as exciting news that he taking on more responsibility. As part of the announcement, his teacher also laid out some ground rules for appropriate lunch table behavior for those choosing to sit around Vincent.

  1. Respect (insert child’s name) lunch space.
  2. Do not touch (insert child’s name) food.
  3. Keep your hands to yourself.
  4. Be careful to not spill anything on the table.

One aspect that needs special attention as a child grows older and more independent is the child’s ability to talk about his/her food allergies with confidence, and with absolutely no shame or embarrassment. This is why it’s so important for a child to be able to talk and teach about food allergies.

Noticing that our son was hesitant to speak openly about his food allergies, we decided it was important to help boost his self-assurance and self-confidence by providing opportunities to speak about his food allergies.

After practicing with us, a few days later our son gave the following talk to his class and teach about food allergies.

Responsibility With Age: Have Your Child Teach About Food Allergies

Hi Everyone.

I’d like to tell you about my food allergies. Food allergies are when your body sees certain foods as an enemy and has an allergic reaction, which is called anaphylaxis.

I was diagnosed with my food allergies when I was 11-months old. I’m allergic to milk, eggs, peanuts, tree nuts and sesame.

Starting in fourth grade, I started to take more ownership in caring for my food allergies. As I grow each year, I take on new responsibilities in preparation for middle school. For example this year, I started to carry my own medicine pack, or what I call my medpack. 

I carry a medicine pack in case I have an allergic reaction that can happen if I touch, eat or inhale one of my allergens.

I’d like to ask for your help in four ways:

  1. If you make a mess while eating your snack, please clean up your area with the available wipes in the classroom. Also, wash your hands after snack.
  2. Please respect my space at the lunch table and be sure to not touch my food.
  3. Please respect my food allergies and me by not teasing or bullying me about my food allergies. When I’m teased or bullied about my food allergies it makes me feel sad, very frustrated and not liked because I can’t do anything about having food allergies.
  4. If you see me with a rash, swelling, difficulty breathing, please know that I am not fooling around. Tell a teacher or adult near me immediately. My food allergies are very severe and when I’m having an allergic reaction it mean s a trip to the hospital and even worse, and I hate to say it, but I could die from them. It’s just the way it is.

I want to thank each of you for your attention and for being a good friend to me. Know that you can always have a friend in me as well. 

Does anyone have any questions?

Since there are different students in his class each year, this presentation is given on an annual basis. Our son’s classmates have responded positively; asking questions and even watching out for him.

Not every child is going to relish presenting to a class initially. Start with family, friends and neighbors, so that the audience feels safe and encouraging. By the time a child presents to a class, he/she will feel like a food allergy expert.

We are happy to report that this year, our son entered middle school and thus far it has been a very successful year with receptive and respectful students and school staff. We attribute much of this to our son’s willingness to educate others about his food allergies as well as a thorough food allergy 504 Plan.

Parents, please feel free to use this tool with your child.

If you’re a childcare provider, please pass this along to your food allergy families who can put this tidbit in their tool kit for future use.

School representatives…feel free to utilize this with your food allergy families. This is definitely something that a principal, social worker, school nurse or teacher can discuss implementing in partnership and agreement from parents who have a child with food allergies. Perhaps adding it to your Anaphylaxis Questionnaire* can help expedite this process.

*An Anaphylaxis Questionnaire is a letter sent to all to parents of students with life-threatening food allergies at the beginning of each school year, to assist schools in planning for any necessary adjustments in a student’s school day.

Have a tip to share with me? I’d love to hear it! Please post a comment.

EpiPen Hearing Yields High Drama No Substance

Mylan’s CEO Heather Bresch and a Food and Drug Administration deputy director Doug Throckmorton testified before the House Oversight and Government Reform Committee on Wednesday, September 22, 2016, regarding the high price of the EpiPen®. The questions posed and answers provided were nothing short of high drama with no substance.

Since Mylan acquired the EpiPen® in 2007, the product’s price has increased more than 500%. Personally, I can recall the product being as high as $730 and currently it is riding at approximately $608.

It is apparent that Bresch believes the company has taken reasonable steps to relieve the financial burden from consumers by replacing the $100 coupon with a $300 coupon and announcing the upcoming launch of a generic which will retail for approximately $300. However, refusal to simply lower the price of the EpiPen® has consumers feeling betrayed and fuels the government’s perception that Mylan is playing the ultimate shell game. Plus, let’s not forget the only reason that the coupon was upped to $300 and the unprecedented (Bresch’s word) launch of the generic was due to consumer and finally government outcry with Mylan’s hand caught in the proverbial cookie jar.

Throckmorton was raked over the coals because the FDA approval process is oppressively burdensome. In addition, he was unable to report how many FDA applications were filed for competitors to the EpiPen® because it would go against the FDA’s rules.

While listening to the EpiPen® hearing, I started to think about the corporate value lessons learned during the Hobby Lobby case a couple of years ago. Here’s a sentence from Justice Samuel Alito’s opinion in the case that can easily apply to the EpiPen soap opera:

EpiPen Hearing Yields High Drama No Substance

As the bad and the ugly continued to unfold during the hearing, or not unfold for answers not provided, I couldn’t help but also think about the good that Mylan has done with regard to disease awareness, stock epinephrine in schools as well as other places such as zoos, museums, amusement parks, etc. However, any of the good that resulted from Mylan’s efforts is now overshadowed by the ugly. New questions arise such as, Was there even a glimmer of sincerity in those actions? Did Mylan really want to create more investor value and line executive pockets on the backs of food allergic children? Outraged congressional representatives used phrases like a rope-a-dope strategy, an unfair monopoly, a shell game, a sham, something smells fishy, numbers don’t add up, charts that seem dumbed down, and a simple but corrupt business model to describe their understanding of Mylan’s actions.

Just because the government is looking into Mylan’s practices, doesn’t mean our work is over. Continue to communicate with your legislators via calls, emails and letters and share your prescription drug pricing woes until change actually happens!

To truly understand the lack of answers provided, along with some great one liners delivered by government officials, view the full event below in its entirety.

Stay tuned…Heather Bresch and Doug Throckmorton are due to disclose more information in 10 days.

This drama is far from over.

Save on EpiPens and Other Household Prescriptions

Save on EpiPens and Other Household Prescriptions

Save on EpiPens and other household prescriptions? It’s a question that most of us ask ourselves. As you know, healthcare in the United States can be very expensive. While our premiums continue to rise each year, our benefits seem to dwindle. We’re paying more for less coverage, alternative foods are more expensive and the lifesaving medication cost of EpiPen® feels more expensive than ever for many families.

Many are quick to point the finger at Mylan, the maker of the EpiPen®. However, just as health insurance plans are complicated, so is the the pharmaceutical supply system. The pharmaceutical supply chain not only involves pharmaceutical manufacturers, but also multiple parties such as wholesalers, pharmacy retailers, pharmacy benefit managers and payors. These parties all play a role in determining access to, and the ultimate retail price of prescription drugs.

Dan Hammer of 790 AM Fargo Moorhead interviewed me on the high cost of EpiPen®. I prepared a variety of information to share with Dan on the topic of food allergies and epinephrine, but there’s only so much time in an interview, to be exact 13 minutes and 52 seconds. ; ) Click here to listen to the full interview.

Here’s a list of suggestions on how to save money on the EpiPen® as well as other prescription drugs in your household.

Continue reading

EpiPen® hold time is now 3 seconds

The EpiPen® hold time is now 3 seconds and there are other administration guidelines that the FDA has changed due to lacerations and injuries related to usage. There are three points of change listed below; however, you can read the FDAs document in its entirety:

  1. Restrict Patient’s Leg, limit movement during epinephrine administration

    EpiPen® hold time is now 3 seconds

    Image courtesy of Mylan

    Lacerations, bent needles and embedded needles have been reported when epinephrine has been injected into the thigh of a young child that is moving, kicking or uncooperative during administration. To minimize the risk of an injection-related injury it is advised that caregivers hold the child’s leg firmly in place and limit movement prior to and during the injection.

  2. EpiPen® hold time is now 3 seconds

    The EpiPen auto-injector should be held firmly in place for 3 seconds prior to removal.

  3. Serious Infections at the Injection Site

    Rare cases of serious skin and soft tissue infections, including necrotizing fasciitis and myonecrosis caused by Clostridia (gas gangrene), have been reported at the injection site following epinephrine injection for anaphylaxis. Advise patients to seek medical care if they develop signs or symptoms of infection, such as persistent redness, warmth, swelling, or tenderness, at the epinephrine injection site

This information came on the heals of the Minnesota Children’s Health Network finishing a revamp of their Anaphylaxis Action Plan, it was an honor to serve on the committee that examined and enhanced this Plan. The FDAs new administration guidelines will be included in the revamped Anaphylaxis Action Plan that is set to release just in time for the 2016-2017 school year.

If you’re looking for more information, be sure to: check out Mylan’s EpiPen® website, read the box insert of a newly filled EpiPen® prescription, contact a Mylan Customer Relations Representative at 800.395.3376 or speak with your physician.


What You Can’t Afford to Be…

Less than 48 hours before Food Allergy Awareness Week kicked off, I raised food allergy awareness in my own home with my allergic son.

While my husband and I freely educate everyone about food allergies, we chose to hold back one detail with our allergic son. We basically told him everything about food allergies, except we kept the L.T. on the down-low, L.T. = Life-Threatening.

I know, I know, chastise me if you want. Our goal was to tell him prior to starting first grade, this upcoming fall. We knew it was appropriate to provide him with all the symptoms, the emergency protocol, the knowledge that an ambulance ride was necessary and a possible short or long hospital stay. But death, that seemed too frightening for my doe-eyed, sensitive boy. The discussion made even me worry. I think I would prefer to have the birds and the bees talk to telling him food allergies can be life threatening. Here’s why… Continue reading

Dr. Xiu-Min Li Keynote Speaker at AFAA Annual Conference

On Saturday, September 17, 2011, the Anaphylaxis and Food Allergy Association of Minnesota (AFAA) had its annual medical conference. As an AFAA board member, I had the privilege of dining with our keynote speaker Dr. Xiu-Min Li, Professor, Pediatric Allergy & Immunology at Mount Sinai School of Medicine. It was truly a pleasure to get to know this gifted woman who has brought so much promise to the food allergy community.

For those unfamiliar with Dr. Li, she has developed the Food Allergy Herbal Formula-2 (FAHF-2), which is derived from a Traditional Chinese Medicine (TCM) formula for the treatment of food allergies.

Initially, a clinical trial was done on mice where FAHF-2 showed it could block allergic reactions to food lasting as much as six months.

Phase I of the human trial showed FAHF-2 was safe and well tolerated in people with multiple food allergies.  This Phase II trial will determine the effectiveness of FAHF-2 when used as a treatment for food allergy.

As Dr. Li stated, “While this research brings with it so much promise, continued research is important to make some of these herbal remedies progress from dietary supplement to prescription drugs.”

Thank you so much Dr. Li for your dedication to the lives of the food allergic.

For more information on this study as well as Dr. Li, Click Here.

Other great presentations were given by:
Allan Stillerman MD, “The Importance of Well-Done Scientific Clinical Research: It Affects You!”
Katja Rowell MD, “Food Allergies & the Feeding Relationship: Reassurance on “Failure to Thrive”
Kristin Beltaos, MA, “Tame the Chipmunk on the Double Espresso”
Andrea Dorn, “Navigating the Gluten Free World”
Anna Kerr, “Easy Exercises to Reduce Everyday Stress”

Special thank you to Nona Narvaez and Jeff Schaefer, the founders of AFAA. Their tireless work is so appreciated!