Riley was only a few days old when he started experiencing severe diarrhea and spitting up. His parents Michele and John switched him almost immediately from Good Start to soy formula since they had experienced similar symptoms with their two older daughters who had done well on the soy.

Unfortunately Riley’s symptoms persisted and he developed a rash on his face. Doctors diagnosed him with reflux and “normal” infant facial rash.

“My husband and I were beside ourselves wondering what the problem was,” says Michele, Riley’s mom. “I knew something wasn’t right and was determined to put my finger on it.”

Riley Before Neocate

Over the course of two and a half months, Michele went back and forth with the pediatrician, making numerous visits, emails, and phone calls trying to figure out what was wrong with Riley. They introduced Zantac to try and control Riley’s reflux and tried thickening his formula with rice cereal – which just made things worse. Riley also switched formulas multiple times, from soy to Nutramigen and then Alimentum, both hydrolysate formulas.

“Nothing helped,” says Michele. “He spit up almost everything he ate and everything else came out the other end!”

Finally, when Riley was three months old, both blood and mucous were found in a stool sample, indicating an allergy. A pediatric allergist and pediatric gastroenterologist both confirmed the diagnosis of milk and soy allergies, allergy-related eosinophilic esophagitis and allergy-related gastroesophageal reflux.

Riley’s pediatrician recommended Neocate Infant, a hypoallergenic, amino acid-based formula. Because Neocate is made up of individual amino acids (the building blocks of protein), it was easier for Riley to digest than the hydrolysate formulas he originally tried which contain protein chains that have only been partially broken down.

Within 36 hours of starting on Neocate, Riley’s diarrhea stopped, his reflux decreased significantly and his facial rash cleared up. “Neocate was and is LITERALLY a lifesaver for our son,” says Michele.

Riley After Neocate

It took three long months and lots of trial and error to diagnose and treat Riley. Since starting on Neocate he is finally getting all the nutrients he needs to grow and thrive.

“I don’t throw the word around much…but every time I tell people about Neocate the word “MIRACLE” seems to follow!” says Michele.

 If you want to share your before and after photos, we’d love to see them! Send us an email at FoodAllergyLiving@shsna.com.

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

We’ve been talking a lot about carbohydrates and sugar in regards to what they are and how they affect the body.  So for today’s post, I thought I’d wrap up our carbohydrate series with a post on how you can spot sugars on the ingredient list of your food labels. 

In my carbohydrates 101 post last week, I mentioned how sugar is a simple carbohydrate which are obviously found in sugary treats but can also be found in other nutritious foods.  However, you should always be cautious of how much sugar your little one is consuming since a high sugar diet can lead to issues like tooth decay, high blood sugar levels and weight gain.

As with other ingredients like gluten or dairy that sometimes can be hidden within the ingredient lists, sugar can also be difficult to find. So when you are looking at the ingredient list on your food labels to find your child’s allergens, be sure to check for sugar as well. 

Here are some terms that will help you identify sugar:

• White sugar
• Brown sugar
• Maple syrup
• Honey
• Fruit juice concentrates, including apple and pear
• All ingredients ending in “ose” like:
  • Fructose
  • Sucrose
  • Lactose
  • Maltose
  • Dextrose
  • Glucose

As a parent, I was a little surprised by the amount of sugar found in many different foods such as spaghetti sauce, ketchup and even low-fat salad dressings. I know for many parents, a big eye opener is the amount of sugar found in most fruit juices even if they do claim 100% juice.  Are there any other foods with a sugar content that you found surprisingly high that you want to share with us?

- Sarah

In order to raise awareness about the impact of food allergies, we’ve decided to hold a Video Contest so that you can share your personal stories. Our hope is that your videos will help educate others and bring about a new understanding of food allergies. 

We’re asking you to share your family’s allergy story by posting a short 1-2 minute video on YouTube.

Video Contest Submission Requirements: Please post all video submissions to YouTube by June 20, 2010.

• Use the following format for your video title: “Neocate Video Contest – (FAMILY/CHILD NAME)’s Story”.
• Email the link to foodallergyliving@shsna.com with “Neocate Video” in the subject line letting us know that you’ve submitted on YouTube.
• Share your family’s story and experience with food allergies. Of course we’d also love to hear how Neocate has helped your little ones!

Once we receive everyone’s submissions, we will select the first, second and third place winners and award them with Visa gift cards for $100, $50 and $25 respectively. The winning videos will also be posted here on Food Allergy Living and on Neocate’s Facebook page.

We can’t wait to see your videos! Lights…Camera…Action!

- Sarah