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The recommendations have changed. Now what?

8/31/2015

by Amanda Painter, South Chapter Coordinator

In response to the LEAP (Learning Early About Peanut) study, the American Academy of Pediatrics and other medical professional organizations are endorsing the recommendation of early introduction of peanuts to infants considered “high-risk”. AAP News (High-risk infants were defined based on family history, egg allergy and eczema).

First, I want to most importantly note that it is recommended that infants at high-risk be evaluated and tested, by a medical professional, before introduction. There will be infants that test positive at a young age. Please also be aware that there were a number of children in the LEAP study that weren’t able to complete it because they had a confirmed peanut allergy. Confirmed through proper testing/challenge. Do not feed your at-risk infant peanuts without consulting your physician (preferably a board certified allergist).
You can read FACET’s Medical Advisor, Dr. Singer’s thoughts on the LEAP study here.

Now what? What do we do with this information? How do we respond?

To the parents of children with food allergies:

Your child’s food allergy (peanut or other food) is not your fault. All we can do as parents is make the best choices we can for our family with the given information and knowledge we have at the time. Blame and guilt are not healthy emotions. I urge you to not be bitter. Medical research is always ongoing and recommendations are ever changing.
It is possible that if the recommendations were different when your child was an infant that it wouldn’t have changed anything for your child. I know many of your children had reactions at very young ages. It is possible that if your child was selected for the study that they would have been part of the group unable to complete it.
Continue to raise awareness, teach your child self-management, and advocate for their needs.

To those that don’t have child with a food allergies (or have a food allergies yourself):

Please understand that this changes nothing for those of us managing a peanut allergy in our home. This isn’t a cure. This is not the time to point fingers and make comments of “if only you had fed peanut sooner”. That helps nothing at this point. Believe me, parents of children with food allergies are already hard on themselves. They have always wondered if they did something to cause this. This change in recommendation has likely already caused these parents to be upset, angry, confused, or resentful. They never wanted this for their child.
This is only a study on early introduction of peanuts. Don’t misunderstand this study to mean that early introduction of all foods will prevent all food allergies. Notice the babies in the study are partially considered high-risk because of their already diagnosed egg allergy. Many infants show signs of food allergies and are diagnosed well before the possibility of food introduction.
Be aware of the 15 million Americans that currently have a food allergy. There are children and adults in your community (family, church, neighborhood, school, etc.) that need your understanding, compassion and support.

In my personal story, my daughter’s significant eczema (later discovered to be her reaction to the foods I was eating that she was exposed to through nursing) started before she was 3 months old. I could not have introduced any foods to her before that point. She tested positive for milk, egg, peanut, and tree nut at 9 months (others were added later and some outgrown). Hindsight shows that she was clearly reacting at 3 months. Was she allergic to all of these allergens at that point? What if her allergies were only milk and egg at 3 months? If we had introduced peanut at 6 months would she not have that allergy at 9 months? We’ll never know. At this point I won’t waste my time wondering “what if”…. that’s not productive.

The AAP recommendation change does nothing for my daughter or for the many families that I work with. It may slow the growing number of children being diagnosed however. Fewer children diagnosed with a peanut allergy can lead to fewer children living with the heavy weight of self-management on their shoulders, fewer parents terrified that they may receive the dreaded phone call about a reaction while their child is at school (Kindergarten or college), and possibly fewer precious lives lost to anaphylaxis. Again, it’s not a cure, but it is progress. I’m all for progress.

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Making a Positive Impact

8/4/2015

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by Amanda Painter, South Chapter Coordinator

Our world is often turned upside down after the diagnosis of a life-threatening allergy. Many hours are then spent on research, how to avoid the allergen, what could happen if there is accidental contact, and on and on.

While this research is crucial and a part of the food allergy journey, I think it is important to not let it consume you. Once you have a good handle on the diagnosis, know prevention steps and are confident in your emergency preparedness, I think it’s a good time to take a step back. Take a break from reading the scary stories and find something else to focus on. This could be a new hobby, learning a new skill, or a home project.

For me, this new focus was still concentrated on food allergies but the focus was outward. My goal is to support those managing food allergies and to educate those that aren’t. I’m able to do this in many ways through FACET. This allows me to focus on something I’m passionate about and put my energy and knowledge into something positive and productive, instead of allowing the anxiety and fear to consume me.

I would like take this opportunity to highlight two companies that were founded by individuals doing the same thing. They have used their expertise to make a difference for others.

The first company is LifeReach. Here is what the co-founders shared with me about their inspiration:

“As the mothers of children with life-threatening allergies, we were determined to keep our children safe, while allowing them to lead full lives. As our children became old enough to be with caretakers, we focused on creating the feeling of home in our children's schools and churches. So, we started LifeReach, LLC to prepare those communities with quick, easy access to life-saving medication and education on how to recognize and respond to anaphylaxis. We rejected the fear and hysteria surrounding anaphylaxis and dedicated our efforts to helping change the outcome of an individual experiencing anaphylaxis. LifeReach provides bright orange, durable, tamper-evident Anaphylaxis Emergency Kits (AEK) to store epinephrine auto-injectors (EpiPen or Auvi-Q) as well as education materials approved by a nationally recognized allergist. After 9 years of successfully implementing our system in schools, we have heard from numerous caregivers sharing with us they are more ready, willing and able to be first responders while waiting on emergency 9-1-1 personnel should the need arise. Now, LifeReach is growing beyond Tennessee and placing the LifeReach AEK (same concept as AED) and educational materials in any appropriate location (schools, airplanes, stadiums...) to provide easy access to the life-saving medication, the knowledge of when it's needed and the confidence to use that medication.

Visit our website, LifeReach.com or call 1-844-kit-4you so we can help you and those in your community be more prepared.”

- Carol Len Portis and Katie Lennon - Co-Founders of LifeReach, LLC

The second company is Kiss Freely. While the companies seem very different, their motivations are very similar. I personally have had an excellent experience with their products as I was searching for make-up for my daughter’s ballet recital. (Kiss Freely makeup is free of her allergens!) Jennifer Kurko is the Founder of Kiss Freely. Here is her response when I asked her about starting the company, their goals and how it has been beneficial to her personally:

“Our goals for the company is to provide a safe alternative for people with food allergies and their loved ones, and to increase awareness, safety and research for food allergies.

We decided to start the company after my oldest daughter, who was 6 at the time, suggested it! I had been making lip balm and body butter for her for a while when she said, ‘I can't be the only person who needs special lip balm. I think we should sell it!’ We decided as a family that if we were going to do this a portion of the profits would go to food allergy advocacy, awareness and research.

As you know, we make a lot of make up for recitals. I know that that mom is already worried about so many things on recital day (is there food back stage? Who will keep the epipen?). I am so grateful that I made that mom's day a little easier. And seeing these young girls getting to wear make up like their friends makes me tear up every time. I show the pictures to my daughters and they always feel connected to this other child who is just like them. In a way the business has helped them connect with so many other people who are similar. It has made them feel less different.

We have a motto in our house, ‘there is a solution to every problem.’ The first few months or even years it seemed as if we could not really find a solution to the food allergies. Our business had helped us as a family to keep trying. We made so many bad lip balms before we made the perfect one. Right now I am working on liquid eyeliner for a nut allergic teenager. I am on my 3rd try and as a family we talk about it, our girls make suggestions and keep trying until we find something that works.

For all of us the anxiety is always there. The business for me, allows me to reduce the anxiety in one small area. “

I know I speak for many others in the food allergy community when I say – Thank you and great job, ladies!

If you find yourself becoming consumed in a negative way by managing food allergies, if the fear and anxiety are overwhelming, I encourage you to find something constructive to do with your excess time. Let these stories inspire you to focus outward and make a positive impact.

There are countless other companies that were founded for the same reasons. What is your favorite company that was started by someone with a personal connection to food allergies, working to make a positive impact?

Disclaimer: FACET does not endorse or sponsor the products/companies above. Nor has FACET been paid to include these products.

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The recommendations have changed. Now what?

Making a Positive Impact

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