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.
Showing posts with label EGD Results. Show all posts
Showing posts with label EGD Results. Show all posts
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.
Wednesday, June 17, 2009
Abigail's Results
I received a phone call from Dr. Putnum today. He said that Abigail's scope looked great! There were only minimal eosinophils; nothing to prevent food trials. However, because of Abigail's status with this disease and her age, he suggested that we wait another six months to a year to begin trialing foods. This is because most of the children like Abigail fail their food trials, especially at her age. Another big reason we are waiting is because Abigail shows little to no interest in food. She is curious about what certain foods are, but other than asking what it is and if you eat it, she shows no desires to consume it herself. If and when she shows an interest and we cannot put her off any longer, then we begin the trials. Unless of coarse, we reach close to the year mark at which point we will begin them either way. When we do begin, we will start with grapes. She will have to eat them for 3 months and then be re-scoped. Although this was a bit disappointing, I agree that this is in her best interest. I would hate to set her up for failure by beginning too soon.
Friday, January 16, 2009
Ross' Results
We wanted to let you all know that we received Ross' results in the mail today, and they were not exactly what we were expecting. The results were actaully much worse than we had originlly anticipated. There were increased eosinophils present in his small intestines, large intestines, and blood vessels; as well as, his esophagus. The numbers were outstanding in his esophagus at 245 eos/hpf...they should be zero. His doctors have a meeting scheduled for February 5 to discuss his treatment options. At this point, his options are very limited. The three options that we know about at this time are: 1. Formula only for three months (like Abigail) 2. Large doses of inhaled steroids swallowed (indefinately) 3. Biological trail drugs. Please be in prayer that God direct the doctors and us down the right treatment path and that we are prepared to do what needs to be done. Thank you all for the prayer and support you have shown our family. Although this news was difficult to take in we know the Father has mighty things in store for the future!
Thursday, January 8, 2009
Updates
Although we do not have an update at this time on Ross' progress, he did make it through his scopes in Cincinnati just fine. We are still waiting on the pathology report and "game plan" for treatment from the doctors. We knew we would have to endure quite the wait because his results have to be read by two different doctors at two different hospitals; but he is beginning to get a little anxious.
Abigail on the other hand, does have results. She still has a few (11 eos/hpf) residual esoinophils. There was some progress from the last scope, so we were instructed to continue formula only for the next six months. At that point we will scope again, and hopefully be able to start food trails.
Abigail on the other hand, does have results. She still has a few (11 eos/hpf) residual esoinophils. There was some progress from the last scope, so we were instructed to continue formula only for the next six months. At that point we will scope again, and hopefully be able to start food trails.
Sunday, June 22, 2008
June 2nd Biopsy Results
I just spoke with Abigail's GI at ACH. The biopsy showed that Abigail has increased eosinophils at 12 eos/hpf in her lower esophagus. This number is no where near the 90eos/hpf like it was in December, but there should never be any eos present in the esophagus. There was also slight furrowing again. Her doctor doesn't want to change anything right now since we will be going to Cincinnati Children's in August. My question is; if we sit, wait, and do nothing will her eosinophils continue to rise? I guess that is something we will have to wait and see about. Abigail is still only drinking about a maximum of 21oz. per day, but she is maintaining her weight so her doctor is happy with it. For now anyway. Thankfully, her doctor is going to email, Dr. Putnum (Cincinnati GI) to give him the results of this last biopsy. Now, we continue to wait. Let me just say how fortunate we have been to have such a great Gastroenterologist. For any of you that are searching Arkansas or the surrounding area for a good GI that has experience with Eosinophilic Disorders, Dr. O'Connor is excellent.
Addendum: This scope was done less than 12 weeks after given steroids; therefore, these numbers are inconclusive. Most likely the eos/hpf would have been greater.
Addendum: This scope was done less than 12 weeks after given steroids; therefore, these numbers are inconclusive. Most likely the eos/hpf would have been greater.
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