Since I last posted, Abigail was air-lifted on March 24, 2008 to Arkansas Children's Hospital. As a result of food impaction, she spent five more days in Arkansas Children's Hospital. We originally took Abigail to the ER at Washington Regional Medical Center because she was having difficulty breathing. When we arrived her pulse OX was 85. Once the medical staff determined that she most likely had a food or foreign body impaction; she was moved to ACH. She passed the food bolus before the helicopter landed at ACH (9 hours later); so this made it very difficult for the ACH staff to determine what had happened. Their explanation for the breathing difficulty was pneumonia. However, there was no physical or medical evidence supporting their pneumonia theory so they did a bronchoscopy on March 28, to rule out aspiration of the food particle. The scope came back clear, and we were released the next morning, with no real explanation of what happened. Let me follow up by saying that Arkansas Children's Hospital is a wonderful hospital with excellent doctors, and I know we will be seeing them many times over.
Like I said, "We will be seeing them many times over," and we are back for another visit. Abigail started having feeding refusal again on May 29. This was a result of an allergic reaction/eosinophilic flare from the antibiotic, Zithromax. I had spoken with Abigail's PCP about the research I found with EE patients and antibiotics, and he insisted that the Zithromax would be okay. I discovered in my research that many eosinophilic patients could only take Omnicef or Duricef; so those of you reading this with children who have an EGID, keep this in the back of your mind. It always pays to listen to your God-given "gut" instinct. So, on June 2nd, Abigail had her fourth upper EGD and third Flex Sigmoidoscopy. Her GI saw slight furrowing in her esophagus again, and believes it is due to the antibiotic. We will have the biopsy results sometime next week, but we all suspect an increased number of eosinophils.
In other news, Abigail has a Neurology appointment on June 24, Orthopedic appointment on July 10 (both at Arkansas Children's), and will be seen at Cincinnati Center for Eosinophilic Disorders the week of August 11. Hopefully we will get more answers and insight into all that Abigail's little body is going through.Our journey with our little girl and her rare disease is just beginning, and oh what a journey it is going to be!
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.
Sunday, June 22, 2008
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