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, June 11, 2009
Ross' Scope
Ross' scope went well. The doc said that he has scarring which may not ever go away, but visually there were some subtle improvements. We are all hoping and praying for clear pathology results. We will not know any real results until those pathology reports come in, but for now he can begin a beef trial. He will continue the formula diet as well until he has a well-rounded diet; this will take some time to develop. If his scope is indeed clean then he can continue the beef trial and add a new food about every 3-4 weeks; tracking his symptoms. He will do this until he has four foods and then will be re-scoped.
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1 comment:
I will be praying for both your husband and daughter that there scopes come back Good and clear!and most of all that Gods will be done in and through your husband and daughters sickness!I will be praying that all goes well tomarrow with your sweet girls scope and being put under!I look forward to keeping in touch with you!I love that I know someone going through the same thing as Iam :) talk to you soon!!
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