The elevator to success is out of order. You'll have to use the step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Monday, July 26, 2010

Elemental (Amino Acid-Based) Formula Coverage

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day.  Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods.  These formulas are life-sustaining to these children.  Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea. 

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food.  In most states, this is not the case.  There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best.  Here is that list with links to their coverage:

Monday, July 19, 2010

Individualized Education Program (IEP) and Tips for Parents

With August quickly approaching, so is the beginning of least for those of us that live in the south.  The start of school also means IEP meetings for many of us with children with special needs.  Below I have given an overview on Individualized Education Programs (IEP), as well as listing resources to help parents prepare for an IEP meeting, whether it be your first or your fifteenth.  Hope you find this post useful.

An Individualized Education Program is mandated by the Individuals with Disabilities Acts (IDEA).  The IDEA requires the public schools to develop an IEP for every child that has met the requirements to be considered in need of special education or related services.

In order for an IEP to be successful, parents, teachers, other school staff, and even sometimes the student must work together to identify the student's needs and the best way to address them.  So if your child has been identified with a learning disability and is eligible for services, the next step is to set up an IEP meeting.

Saturday, July 17, 2010

Thanks To the National Institutes of Health (CoFAR) and Voters for EGIDs at Chase Community Giving

During National Eosinophil Awareness Week it was stated that the National Intstitutes of Health (NIH) gave $0 a year in funding toward Eosinophil research.  I am happy to say, that is no longer the case.  In a press  release on Wednesday, July 14, NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant, NIH announced the Consortium of Food Allergy Research (CoFAR) will be funded for 5 more years.  CoFAR has been working on ways to treat and prevent food allergies since 2005.  It will now broaden it's scope to include genetic causes of food allergy and studies of food allergy associated with EGIDs, mostly EE (EoE).

While food allergies are associated with the production of immunoglobulin E (IgE) antibodies as a response to a food which may lead to symptoms anywhere from hives to anaphylaxis, EGIDs can also be associated with IgE, but are also associated with stomach pain, vomiting, chest pain, and trouble swallowing.  There is also inflammation, irritation and a large number of eosinophils in the esophagus.