Special Needs: 3 Emotions it's Okay for Moms to Feel | iMOM

First of all, I need to once again apologize for my lack of posts on this site.  For a year and a half I had agreed to a full time substitue teaching position.  Between that and parenting my two children with special needs, I literally had very little time for anything else, but to remember to breathe.  Because of this, I find the article that I am posting about even more relevent.

Below is an article, Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM, from the blog iMOM that I feel is a must read for all parents with children of special needs.  We, as parents of these children, often expect more from ourselves than those of children without special needs.  As the article states, there is an added layer of complexity to being a parent of our children.  Please read the article to find out more about the 3 emotions we are ALLOWED, and have every right, to feel:  tired, discouraged and sad, but more importantly, some tips to help us through those emotions.

Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM

National Eosinophil Awareness Week - Day 3

Today Andrew and I wore our Eos T-shirts to school.  We also passed out dum dum lollipops to help spread awareness for these disorders.  I was pleased when several teachers asked me what my shirt said and I had the opportunity to educate them, if even just a little, on EGIDs.  The student's in Andrew's classroom (and mine as well) were full of questions.  I continue to be proud of how well Andrew handles his disease and now of the advocate he is becoming.  It is so very important for the people that are suffering from this disease that awareness is spread.  Please take time to write to your congress person tomorrow to remind them that this is National Eosinophilic Awareness Week.

Thank you to everyone that continues to support us!

This is a video put together by another Eos family.

Just......Imagine a Cure!!

National Eosinophil Awareness Week - Day 2

Today is the second day of National Eosinophil Awareness Week.  My goal was to post something each day no matter how busy I was.  I have already missed my goal, but I am going to work hard to obtain it for the rest of the week.

I feel it fitting to start this post with an update on Andrew's status.  Andrew began food after 9 months of an elemental diet last fall.  He has failed 4 trials by symptoms and had "passed" peaches and sweet potatoes with 12 eos per high power field in January.  On May 5 he had another endoscopy with biopsies after trialing pinto beans and grapefruit.  To our delight, the results were the best he has ever had...0-1 eos per high power field in all three sections of the esophagus.  For a child who at one time has had so many eos that the pathologist could not count them on the biospsy slide, this is truly amazing. Actual remission, even if he is on 60mg of prevacid and flovent each day.  What a way for us to prepare for National Eos Week!  And Andrew was able to celebrate by adding Lamb to his diet.  I wish I could have captured the pure joy on his face while eating that lamb chop so that when he is in the hospital or in pain I could take it out, look at it and remember there will be more days like this. 

Please help spread awareness for this frustrating disease so that the children and adults suffering can someday enjoy lives normally once again.  People who suffer from eosinophilic disorders can not tolerate food proteins.  Many of them that are on elemental diets can only eat dum dum lollipops.  Although they are not yet safe for Andrew, he will still be passing them out to spread awareness tomorrow.  Won't you join him?

Just a Glimpse

Video by APFED

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:

• Arizona
• Connecticut
• Illinois
• Maine
• Maryland
• Massachusetts
• Minnesota
• New Hampshire
• New Jersey
• New York
• Oregon
• Rhode Island
• Texas
• South Dakota

Read more »

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.

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