We had such a great time last year attending the FAAN Walk for Food Allergy in different cities around the country, that we are doing it again!  These walks are organized by the Food Allergy and Anaphylaxis Network to raise public awareness, to provide advocacy and education, and to advance research on behalf of all those affected by food allergies (such as peanut, egg, soy & dairy) and anaphylaxis.

Here is a list of the FAAN Walks Neocate will be participating in:

• Houston, TX – September 11
• Philadelphia, PA – September 12
• Baltimore, MD – October 2
• Charlotte, NC – October 2
• Long Island, NY – October 10
• Tampa Bay, FL – November 13

For a complete list of cities and to register for a walk in your area or donate money, visit the FAAN website.  Are any of your families attending a walk in your city or organizing a team?  We’d love to hear about your plans!  And if you are going to be attending any of the walks mentioned above, make sure you stop by the Neocate booth and say hi!

- Sarah

We are excited to announce the winners of our Neocate Video Contest. Thank you to those that participated and helped raise awareness about food allergies with their touching videos!

Our first place winner is “Matthew’s Story”. Check out his video to find out how EO28 Splash keeps him movin’ right along.

Our second place winner is “Joshua’s Story”. His video shares his and journey with eosinophilic esophagitis and life without food.

Has anyone else made videos to raise awareness about food allergies? We’d love to see them – be sure to post a link in the comments!

- Sarah

Our post today is a guest blog entry from Brittney, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.

I’m Brittney, a stay-at-home-mom to three beautiful kids; 2 bouncing, beautiful girls and a sweet baby boy.

My journey with infant reflux and severe food allergies started when our second daughter, Elliott (Ellie), was born. Ellie immediately started with symptoms of what I now know as reflux and Milk/Soy Protein Intolerance (MSPI) (for Ellie, her reflux was a by-product of her untreated MSPI and various food allergies).

In the hospital she appeared to be a normal newborn. She was a little “spitty” but nothing that struck us as odd. She only had one bowel movement in the hospital and thus began our journey to what seemed like hell and back. When Ellie was four days old we went to the new pediatrician because her belly was distended, she hadn’t had a bowel movement since we left the hospital, and she was visibly in pain. We were told to put her on soy formula (which our first daughter was successful with) and to try a few home remedies to relieve her constipation.

In the midst of the formula change and adjusting to life with a newborn again, symptoms of severe reflux appeared. Ellie went from screaming for a few hours a day off and on to screaming bloody murder for hours on end. In desperation, we went back and forth to the pediatrician begging for help and answers. We were told countless things. She just has colic… She’ll outgrow it… Try some cereal… etc., etc.

We were put on medications such as Axid, Zantac, Erythromycin, Prevacid capsules, and Prevacid Solutabs. Finally one night after Ellie screamed for 22 hours straight and the pediatric nurse assuring me she just had “colic”, we made the decision to go back to our previous pediatrician across the state line. The next morning we were seen by our current, open-minded (and amazing!) pediatrician and have never looked back. Ellie was started on 30mg of Nexium a day and switched to Neocate, an elemental formula for kids with severe food allergies.

Throughout the following months, Ellie underwent countless procedures, x-rays, blood draws, ultrasounds, and doctors’ visits to get her condition under control. We trialed and failed food after food after food with her. We were told all of those common myths by the GI and the only thing we were left with was frustration and a daughter completely and utterly miserable. After a few months of being on the Nexium and Neocate combination, things started to look up. By a year she was a new baby and now, at 2, I don’t even recognize the once miserable baby she was. She brings such joy to our home!

When our third child, Cohen, was born, I noticed his bowel movements were filled with mucous (a tell-tale sign of a milk intolerance). I immediately cut all dairy from my diet. A week or two later I cut all forms of soy. Like Ellie, while we were trying to get his milk situation under control, I noticed reflux starting to creep its way in (both a mechanical issue and an MSPI by-product for Cohen). We wasted no time and went back to our pediatrician to get him a proper PPI (30mg of Nexium also) at MARCI-kids dosing standards. After 7 weeks of continuously mucousy and bloody stools, the decision was made to also put Cohen on Neocate. Within two weeks of being on the Neocate and Nexium combo, he was good as gold and within 6 weeks, his stools were perfect! He’s a happy, healthy, BIG, 7 month old now. He’s the perfect (and final!) addition for us!

Why all the details?, you ask. I share the details with you to let you know that I can relate. I have been there and done it all.

• I’ve dealt with the horrible doctors and the nurses who act like you’re insane.
• I’ve been there with the screaming, inconsolable infant.
• I’ve been there fighting with the insurance to cover this particular test and that particular medication.
• I have been there fighting with my spouse because of all the tension having a GERDling and allergy baby brings.

I have been there. And now I want to be there for you. Our group, and The Reflux Rebels website, was created out of our desire to see no parent, family member, and infant have to suffer like ours have. We hope that you will find this information useful and informative.

And as always, know, It’s not “just colic”

I, along with Lauren, created The Reflux Rebels in January of 2009. Since then it has grown to over 1,800 members. In late 2009, Lorelei and Kim joined us as co-owners of The Reflux Rebels. We are currently in the process of becoming a legal non-profit organization and strive to give back to our community and those in need.

 - Brittney

We’ve written before about eosinophilic esophagitis or EoE, but wanted to share some information today about an important advocacy group dedicated to patients and families with EoE and other eosinophilic disorders known as APFED – the American Partnership for Eosinophilic Disorders.

How APFED Got It’s Start

APFED was started by Elizabeth Mays, a mother whose son had eosinophilic gastroenteritis, to create a place where families could “come together to share knowledge, educate themselves, arm themselves with credible information, meet and support one another, raise public awareness and generate research dollars.”

The group is an excellent resource for accurate, up-to-date information on eosinophilic disorders and related problems. Not only does APFED increase awareness and educate patients and physicians, the group also works to increase funding for research.  There is some nice APFED videos on YouTube and you can also follow APFED on Twitter (@APFEDorg) to keep up with their latest news, announcements and events.

Annual APFED Conference for Caregivers

This weekend, July 16 – 18, APFED will be hosting their 8^th annual parent conference, the 2010 Eos Connection, in Denver, Colorado. The conference is a great opportunity for children affected by eosinophilic disorders and their families to learn from experts and one another.

We will be attending the conference and look forward to seeing some of you there! Be sure to stop by and say hello, we will be filming videos of the attendees with our FlipCam to help increase awareness about eosinophilic disorders.

- Sarah

We get a lot of questions from food allergy families about how to get insurance to cover elemental formula like Neocate. While some insurance companies do reimburse families for these formulas, many do not.

At Nutricia, we feel strongly that formula reimbursement is something insurance should do. And since too many insurers are not providing this important coverage, state laws should make sure that they do. After all, any parent who has had to watch their child endure the misery of food allergies, dairy and soy protein intolerance (MSPI), eosinophilic esophagitis (EE) or gastroesophageal  reflux (GER), realizes how medically necessary elemental formulas are for certain kids.

The good news is that 13 states have some type of formula reimbursement legislation. The bad news is that only 13 states have some type of formula reimbursement legislation.

That’s why Children’s Magic exists. Children’s Magic is non-profit (a 501c4) organization. Their mission (straight from the website) is:

Children’s Milk Allergy and Gastrointestinal Coalition (MAGIC) is committed to promoting healthcare coverage and reimbursement of amino acid-based elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases.

They are working hard, state by state, to introduce new laws (or expand old ones) to ensure that insurers provide this coverage to the families who so desperately need it.

But, they can’t do it alone. They often need help from families like yours to rally grassroots support for legislation in your own communities. 

You can check out their site to see if elemental formula reimbursement is required by law in your own state.

If you want to know how you can help, you can reach out to them at info@childrensmagic.org.

And, if you want to find out about how you can lead the charge for elemental formula legislation in your home state, you can download the Children’s Magic Guidebook for Enacting Legislation.

- Sarah