October 2010
- Volume 5 Issue 10
In This Issue
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Welcome to the new subscribers we have as a result of my interview with CNN on bullying. Stay tuned as we will have more insights on bullying from Dr. Joseph Strayhorn.

In this issue, you will hear from Eric Edwards one of the inventors of a novel epinephrine auto-injector called EpiCard. I had a peek at one of these clever devices last week and it's amazing.

And even if you're a seasoned allergy parent, I hope you'll glance through our Halloween tips.

My son's worst reaction happened from a tiny packet of mislabeled Halloween candy so I never take safety for granted at this time of the year.

Take Care,

Gina Clowes

PS. Want to get through the holiday season safely and peacefully? Looking for recipes and tips to get teachers, friends and relatives on board?

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Seen and Heard
15 Tips for Safe Halloween!
overprotecting mom
Halloween Tips

Gina Clowes

Fill 'er Up! Have your kids eat a nice dinner before trick or treating so they're not tempted to sneak a treat while on the road. If need be, have a few safe pieces of candy or sugarless gum for them to munch along the way.

Be Prepared Even in your own neighborhood, you'll want to make sure you have wet wipes for sticky hands, a flash light, cell phone and of course, your child's epinephrine auto injectors. (Epi-Pen or Twinject). I usually bring a bottle of water too as we make it a rule not to eat or drink anything from others while we're trick-or-treating.

It takes a Village Some allergy moms choose to purchase some trinkets, non-edible treats, or safe candy for their close friends or neighbors to give to their children. For extra safety, you could enclose the safe treats into cellophane or zip lock bag to prevent cross contamination.

Hands On! It's better to have the adult drop the candy into your child's bag, rather than to have him/her put their hands into a bowl of mixed candy that man contain allergens. Some parents choose costumes with gloves if their child is contact sensitive.

Just Say No Or better yet, "No thank you." If asked to select from a bowl or peanut candy or other unsafe treats, teach your children to politely decline. Better not to risk contact with allergens if they can avoid it.

Waiting is the Hardest Part Don't allow your child to eat any candy while trick or treating. If need be, keep a few "safe" pieces of candy or sugarless gum in your pockets for a small treat along the way.

Be the Change Set a good example and help other allergic children navigate Halloween safely by choosing to give out candy with clear ingredient labels, and hold onto the outer bags just in case. Take advantage of allergy friendly candy companies and avoid mixed bags of candy where the "safe" varieties can easily become cross contaminated.

Switcheroo! Buy two of the same treat collectors (bag, or plastic pumpkin etc) Fill one at home with "safe" candy and treats. Enjoy collecting all sorts of candy and as soon as your little one is in the door and washing her hands, switch the unsafe candy with your "safe" one. This worked well for us until age three. By that time, my son had a mental inventory of each piece he collected.

Cash for Pumpkins Program If money is more appealing to your kids, some parents will actually "buy back" the unsafe candy (i.e. peanut) for 5 cents a piece or even pay one set fee for the whole bag! You can also trade candy for a toy that you or your child picked out ahead of time.

Brotherly Love Plan how you'll deal with sibling's candy as well. Ideally, younger ones will trade their "unsafe" candy for treats, cash, or safe varieties. Older ones can keep their candy in a designated safe spot so that they can enjoy it in their lunch, with friends, or at other times outside the home.

Reading is Believing When it's time to indulge, make sure your child knows that only labeled foods are allowed. Avoid "opened" candy that has been put into cute containers or snack bags. If you can't read it, you can't eat it.

Size Matters! Keep in mind that Halloween sized treats often have different ingredients than the regular sized ones. Always read the ingredients!

Kick it out Gather up all of the unsafe candy and get it out of the house as soon as possible. You or your spouse can take it to work or you can donate it to a shelter or a nursing home.

Candy Patrol Remember that kids will have Halloween candy with them for weeks after trick-or-treating. If your child is visiting with friends, be sure to ask about candy dishes or stashes of candy that may tempt your child, especially if he/she is on the younger side.

Party On! If trick or treating seems too risky, consider hosting a party. That way, you can be sure that everything that is served is safe! If you have it on Halloween night, you can allow your kids to pass out your safe candy as well.

The Cauldron is Half-Full There is more to plan and prepare for when you have a child with allergies, but after you get a few Halloweens under your belt, you'll realize how doable it is. The scary and silly costumes and decorations are so hilarious for kids and even with multiple allergies; there are plenty of safe treats. Focus on the fun and what your child can have. You may be surprised that this spooky holiday turns out to be a real treat for your whole family!

This article was originally written for Health Central and is reprinted here with permission.
Intelliject EpiCard
Intelliject EpiCard

Those of us in the allergy community have been hearing about the Intelliject EpiCard (epinephrine auto-injector) for the past few years. Last week, during a national food allergy educators conference, I was able to sneak a peek at one of these clever devices.

Eric Edwards, co-founder of Intelliject, was kind enough to share the story of how this device came about. I hope you enjoy hearing about it as much as I did.
Intelliject Co-Founders Eric and Evan Edwards

Gina Clowes: Eric, thanks so much for agreeing to talk with us about the EpiCard and Intelliject.

I understand that you and your brother Evan both have severe allergies. How long have you had food allergies?

Eric Edwards: At a very early age, beginning when we were just a couple months old , we had severe eczema. The pediatrician told our Mom that we could be chronic allergic, asthmatic children and explained that she would need to be very observant about what we ingested and any associated reactions once solid foods were introduced.

Some of the first reactions were just "trial and error." For example, as toddlers, in the church nursery we were given saltine crackers and had a horrible gastrointestinal reaction. This was reported and it was assumed we were allergic to wheat.

A list of the most obvious "trouble foods" was provided and our Mother tried some of these suspect foods in very small quantities to observe any potential reaction. When she tried giving us a small piece of fish, we both broke out in hives almost immediately.

Other problem foods were eggs, raw carrots, tomatoes, and citric acid (as in Sprite). We had so many reactions to antibiotics that we ended up just being able to tolerate Clindamycin. Our parents had to take us to the ER many times.

As adults we have outgrown most of our allergies with exception to tree nuts, peanuts, and shellfish. Both Evan and I have had a life-threatening anaphylactic reaction within the last two years requiring epinephrine administration.

Gina: I'm curious to know if you and Evan have the same allergies since you're identical twins.

Eric Edwards: When we were three years old, our parents took us to see an allergist. Up until this time, the pediatrician had handled everything and was actually discouraging the allergy consult - typical for some back then.

At the encouragement of a friend who had a chronic allergic child, we finally saw the specialist and our parents were told that we were probably the "most allergic" children that he had ever treated.

We were "off the chart" to peanut and shellfish. We had very high numbers to eggs, fish, and tree nuts as well. Other significant allergens were to dust, pollens, cats and dogs. We both had the same allergens, just different levels (IgE and RAST results) for the individual allergens.

Gina: Have the two of you outgrown allergies?

Eric Edwards: We outgrew many of the food allergens and by high school our asthma was well under control. We were left with severe allergies to peanuts, tree nuts, shellfish and eggs.

In our early twenties, we were tested again and had outgrown the egg allergy.

Gina: What was the hardest part about growing up with life-threatening allergies?

Eric Edwards: The hardest part about growing up with life-threatening allergies was simply the activities we could not participate in because of them.

Our allergies led to major quality of life issues for us.

Our parents were concerned about us going to camps and some school trips, and for some field trips, we were not able to attend due to concerns for how we would be managed if exposed to an allergen.

Remember that in the 80's, peanut and other allergies were not as well known as today - it was hard for teachers, nurses and others to appreciate the difficulties in managing severe allergies. We were blessed to be able to do many other things such as soccer, swimming, and other sports growing up.

However, there were times when we would have terrible hives just from the cold [cold-induced urticaria].

Gina: How did all this affect the rest of your family?

Eric Edwards: When we were young, it was obviously extremely hard on our parents. Every time we ate at a restaurant, they would meet with the manager or chef and have to explain our situation. It was many times just easier for them to bring something that they knew we could have.

Gina: Studies show that the teen years are the most dangerous for those with food allergies. Did you take chances as a teen or young adult?

Eric Edwards: As teenagers who were driving and experiencing our independence, it was very difficult to have our EpiPen on us at all times. Whenever our parents were with us, our Mom had the device in her purse. When we were "on our own" we really had no place to carry it. We would have it in the car but did not want to have it hanging out of our pockets.

On prom night, our Mom would want to know where the "pen" would be and we would reply, " Well, not in our tux pockets" - we didn't want to draw attention to our medical condition.

What followed would be tears from our mom and arguments from us that there was just no place to put it. At the time, there was only one "holder" for it and that was on a belt around the waist.

I think many teenagers take chances, and this is very dangerous. As we became more educated about the risks, we were more likely to be diligent with carrying the device, especially as we heard stories of others dying from anaphylaxis.

Organizations like FAAN and FAI have raised the awareness, which is pivotal as a resource for parents to help their children understand the risk and validate that the risk is real and it is not just parental overprotection.

Gina: You shared with me that your children also have food allergies. I know how challenging this can be for parents. It is so much harder than it looks. How have your children's allergies affected you and your wife?

Eric Edwards: Our daughter Avryn, who is now four [years old] and our son, Copelan, who is two [years old] both have life-threatening allergies. This has been an eye-opening experience for us.

It is one thing to be a patient, but the entire experience is taken to a whole new level when you become a parent of a food-allergic child. I now know why my parents have so many grey hairs!

We are extremely careful with both of our children and are ultra-vigilant whenever we venture out of the house for activities.

I have now given several presentations on managing food allergies in the school environment and have taken as active as a role as possible in using my experience, both personal and with Intelliject, to try to help my children and others like them become more educated.

Gina: What are your hopes for your children? Eric Edwards: What a great question, and a very difficult one. My hope, like many parents, is for my children to outgrow their allergies and, until that day, to be empowered to gain control over managing the risk associated with being severely allergic.

Gina: How and when did Intelliject and EpiCard come about?

Eric Edwards: In June of 1998 we were headed to Europe with our parents to visit friends. While in the van on the way to the airport, our Mom was inquiring as to how many EpiPens we had, and where they were.

Our older brother, Byron, who was driving us remarked that what we needed was an "Epi-card." For the next three weeks, whenever there was an opportunity, we discussed that idea and, as soon as we arrived home, we began to draw out designs and start some research on the possibility of a new device.

The plan was "put on the back burner" as we began college that fall. In 1999 - 2000, Evan took an "Invention and Design" class at UVA and the "Epi-card" was seriously being studied as a viable option to the pen. [epinephrine auto-injector]

We applied for, and received, a grant to have a prototype made. Intelliject began as a family company with us, our two brothers, and our parents doing all the initial work supported by help from some wonderful advisors.

Since then, it has grown into a mature specialty pharmaceutical company with a core management team having over 100 years of combined pharmaceutical, biotechnology, and medical device development experience. We are dedicated to revolutionizing healthcare by providing patient-centric therapies that allow patients to gain freedom and control over their medical conditions. Epi [epinephrine] is just the beginning.

Gina: What's the journey been like trying to get your product to market?

Eric Edwards: Just that - a remarkable Journey, filled with every emotion in the book, including fear, joy, frustration, happiness, and anticipation. A Journey that has yet to be completed until this option is available to the millions of at-risk individuals in America and beyond.

A key event for us was choosing a commercial partner to bring our product to market. We are excited to have partnered with Sanofi-aventis, who combine the reach and resources of a major pharmaceutical company with a very patient-centric approach, aligned with our own philosophy.

Gina: Will patients need to carry one or two? Or does the device carry two doses?

Eric Edwards: Guidelines suggest having a back-up dose available at all times, especially if in a setting where emergency medical services may be delayed. Unfortunately, I can't comment on specific aspects of the device.

Gina: How is Intelliject different from the other epinephrine auto-injectors?

Eric Edwards: There are a number of differences between Intelliject's epinephrine auto-injector and those currently available. Our product will be smaller, the height and width of a credit card and the thickness of a BlackBerry, and quite a different shape. It also has a number of unique features intended to support the user through administration during the "moment of crisis."

Gina: Do you have an estimate on the cost?

Eric Edwards: Not at this time.

Gina: When do you expect the product to be available?

Eric Edwards: Soon--but not soon enough. We aim to file for FDA approval within the next year or so.

Gina: Anything else you'd like to share with us? We're all ears!

Eric Edwards: Keep up the good work. Support groups and online informational resources like AllergyMoms are vital for the allergic community at-large.

Thank you for all your support as we have dedicated so many years to get this product to the market. The motivation provided by you and other parents of food allergic children are so important to keeping us moving the ball forward.

To comment on this interview, go here.

Coming Up:

Why are food allergic children being bullied and what you can do to stop it.

NIH Clinical Guidelines for Food Allergy: Why were they developed and how will they help the food allergy community?

New Research on Food Allergies: Can blood tests predict who will react?

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