Visual Insight To Life With An EGID
You Are Not Alone!
We started this blog as a support to those families in Arkansas and around the country who are faced with raising a child with a life-altering eosinophilic disorder. It has been estimated that one out of 3,000 people have been diagnosed with an eosinophilic disorder. Children suffering from eosinophilic disorders have a myriad of problems. Some of which include: vomiting, diarrhea, feeding refusal, malnutrition, difficulty swallowing, and failure to thrive, just to name a few.
Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.
NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.
Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.
NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.
Thursday, July 2, 2009
Ross' Results
So, Dr. Kushner called with Ross' preliminary results. He still has mild to moderate eosinophils, but the numbers went down from 245 to 26. That is huge improvement but the disease is still prevalent. He is going to continue his beef trial along with the formula until all of the the doctors (from U.C. and Cincy Children's) meet sometime in July. They will discuss his further treatment options and get back with us. He also still had eos in his small intestines as well as in his esophagus; so this may change his diagnosis a bit, but we will have to wait and see.
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1 comment:
Lisa,
thank you for sharing about your hubby!So if he has eos in his small intestine does that mean he will have the gastro diagnosis as well as EE?Just know we will continue to pray for your family!Have a blessed day!!
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