The elevator to success is out of order. You'll have to use the stairs...one 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.

Tuesday, May 17, 2011

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!!


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Posted by mom with SPECIAL [needs] kids at 8:59 PM
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2 comments:

  1. AnonymousNovember 1, 2011 at 2:50 PM

    Hi: I came across your blog searching for "failed elemental diet". Flovent stopped working for my 14 yoa son within the past six months or so. He has always been on a restricted diet, but this time we took him off the Flovent and really restricted his diet. It failed. I believe we are about to try the elemental diet for six weeks to see what happens. One of our problems is that he does not have symtoms-he cannot tell if he having a reaction or not. At one point we tried him on beef, he did not feel any different, we took him in for the scope and his count was off the chart. So, I am not sure how we are going to introduce foods if this does work. I can't reasonably have him scoped every time we add a food. If the elemental diet does not work, I am not sure what we do. Waiting to talk to the physician, actually, just had him scoped Friday.

    I am in S.C., but we, (mainly my wife) take him to Cincinatti Children's Hosp. I hope everything is still going well for you.

    Pete

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  2. mom with SPECIAL [needs] kidsNovember 14, 2011 at 7:01 AM

    Hi Pete,
    I can completely understand your frustration. My son did not always show symptoms on food either. And he did not show symptoms on the elemental diet without flovent even though he failed the elemental alone. We have been introducing foods for a year. There are different theories as to how long to introduce a food, but we introduce a food for between 4-6 weeks. We introduce one food at time and usually scope after 3 foods. If it is a particulary risky or important food for him we will scope after just one.

    Just a few thoughts---when Andrew failed the elemental, they gave him a boost of systemic steroids. His first scope after that was the first scope he had had ever. They also then put him on the swallowed flovent again and 30mg 2xday of prevacid. Has your son ever had a ph probe test to test for reflux? If he has reflux on top of EoE that could be causing his numbers to rise as well.

    Also, I noticed that you all were in SC. It is great that you go to Cinci, but I didn't know if you were aware that there is a doctor in Greenville that specializes in EoE that worked at Cinci or CHOP (I can't remember which right now). His name is Dr. Markowitz and I have several friends who go to him and would not see anyone else.

    Best of luck on journey. I am in Charlotte if you ever need anything.

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