Jesus said, "This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it." John 11:4



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.

Monday, September 8, 2008

Newest Developments

Our newest development consists of Ross having acute symptoms of eosinophilic esophagitis. For two weeks he felt as if someone was strangeling him; so on August 20he had an EGD. The scope showed a pretty nasty looking esophagus just to be frank. He has several rings, furrowing, strictures, and plaque. All indicative of EE. While waiting for the pathology reports from the biopsies taken, we decided to have him allergy tested. He had been tested for environmental allergens as a teenager; but they tested limited foods. His results showed the following: wheat, corn, oat, rice, rye, onion, yeast, green bean, green pea, orange, and soy. This is in addition to peanut, tree nuts, fish, and shellfish we already knew to be positive. Finally we received the results from the biopsies. He has 50 eos/hpf in his distal esophagus and 80 eos/hpf in his mid esophagus. If you have read Abigail's Story, you will see that her eos/hpf were 90; so they are both in pretty rough shape. We are hoping that since Ross' symptoms have just now exacerbated many years since his first onset (which looking back, was when he was a toddler), that his case will be less severe than Abigail's. We have been having difficulty finding an adult GI that has experience with EE, so we are also taking him to Cincinnati. We have begun the process and look forward to an acceptance call within the next 2 to 4 weeks.
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