Thank You ABC...

Wow! I just watched an episode of ABC's Extreme Makeover: Home Edition via YouTube. The makeover was for the Stockdale family. They have four children with Eosinophilic Enteropathy, and the dad is going back to school in the field of Immunology in hopes to find a cure for his children and others with Eosinophilic Disease. It was an amazing episode and I encourage those of you who would like insight into this disease to watch it. If you view it through YouTube, it is split into 5 parts. Here is the first of five: http://youtube.com/watch?v=vDazFr6d-bY. Let me close with..."Welcome Home Stockdale Family," and thank you ABC for sharing with the world what Eosinophilic Disease is and how it affects our lives!

*Ross just showed me that you can watch the "Stockdale Episode" on ABC's website in its full length at http://abc.go.com/player/?channel=27718. Enjoy!

Abigail's Story

Abigail inside of Angel One on the way to Arkansas Children's Hospital on March 24, 2008.

Note: Abigail's allergies: milk, eggs, wheat, peas, peanuts, white potatoes, and goat's milk. She is also to avoid all tree nuts, shellfish, and legumes.

On December 18, 2007, Abigail was admitted to Arkansas Children's Hospital (ACH); after refusing to eat anything except breast milk for two weeks. I went to several different doctors that told me, "It's just a phase!" Our last option was to drive 3 1/2 hours and take her to the ER at ACH. We were there for 15 days, but it was "just a phase"! While in the hospital, Abigail was diagnosed with Eosinophilic Esophagitis. Meaning that eosinophils had gotten into the tissues of her esophagus causing swelling. This resulted in difficulty and pain when swallowing. The doctor's put Abigail on Elecare Vanilla, an elemental formula that is hypoallergenic because she has such severe food allergies.

The doctor's couldn't tell my family and I much about this disease because they themselves lack knowledge about this rare and incurable disease. We were discharged from the hospital on January 2, 2008. (That's right, Christmas and New Year's in the hospital). Abigail was sent home with an NG feeding tube, six different medications, and terrified parents with no knowledge of what's to come.

Even on the Elecare formula, Abigail still wasn't back to her "normal" self. She had a persistent runny nose and just didn't seem to feel well. Then, she began having chronic diarrhea. She was admitted for another three days to ACH. On March 3, 2008, she had her third EGD and Sigmoidoscopy with biopsies to find that she now has eosinophils in her colon. Her GI doctor finally changed her formula to Neocate; after I asked for this to be done two months prior.

Today, Abigail's sole source of nourishment comes from Neocate Jr. Tropical, an elemental formula. Bananas are the only solid food she can eat. Her diarrhea has ceased and her runny nose is gone. All of this has happened since changing her formula. She has changed into a different child; sleeping through the night, playing with her sisters, laughing, and squealing. The journey continues, but for today we will smile!

Food Bolus and Zithromax

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!

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.