Doctor Frustration

Hailey’s Safety Recommendations

One Very Healthy Looking Child . . .

Two Very Serious Medical Conditions

 

Hailey’s Story    

Hailey has Cold Urticaria and Eosinophilic Gastroenteritis. She also has three less serious conditions; Dermatographia, Reactive Airway Disease, & Psychogenic Esophageal Reflux.

Hailey was born in January of 2003 after a very difficult pregnancy. She came into this world two weeks early at a whopping 9 pounds 1 ounce. The fact that she was not entirely healthy was fairly obvious to mom & dad from the beginning, however, it took a little while to convince the doctors that the more than thriving baby was sick. Hailey was hospitalized with an upper respiratory infection at only 12 days old. Her first newborn screening came back borderline for Cystic Fibrosis, and the news was bittersweet when other screenings came back negative, leaving us with the question, what is wrong with our child? It took until she was 15 months old before we were referred to a Gastroenterologist, he conducted the tests that eventually led to the diagnosis of Eosinophilic Gastroenteritis, but he didn’t make the diagnosis. It was believed she had Celiac Disease, her biopsies were negative for Celiac, but the gluten-free diet helped a lot, so we stuck with the diagnosis. In May 2005 Hailey took a genetic test for Celiac which revealed she did not have Celiac, again leaving us with the question, what is wrong with our daughter? After a serious skin infection that started out as an outbreak of hives and several other rounds of hives, along with a change in pediatrician, we were referred to an allergist/immunologist. That doctor diagnosed Hailey with Cold Urticaria and Dermatographia and eventually Reactive Airway Disease, someplace in there Hailey battled off pneumonia four times and had croup several times a year. The first immunologist/allergist we saw never received full records from the gastroenterologist. Hailey was sent to a neurologist to check for seizures in February 2006, the neurologist determined she was not having seizures, but rather, was having histamine issues related to the Cold Urticaria and Dermatographia. The immunologist/allergist agreed it was a serious possibility and Hailey’s pediatrician sent us to National Jewish for a second opinion and to have the best of the best look over her case. We hand delivered the Gastroenterology records to the doctor at National Jewish at our first appointment. The doctor we saw at National Jewish looked at those records and made the diagnosis of Eosinophilic Gastroenteritis. Hailey’s pediatrician agreed once she looked over the records as well. Now we get to see where we go from here . . .