I have blogged before about my 12-year-old daughter Ruth and our 3-year battle against a rare gastrointestinal, usually autoimmune condition called eosinophilic gastroenteritis or “EG.”
You may recall, it took us months to find out what we were dealing with, why Ruth’s stomach was painfully inflamed and why that inflammation led to chronic anemia that had to be corrected by periodic iron infusions. Ruth ended up missing 70 days of school last year, and you can imagine how that upended normal life in our family. Some of you are all too familiar with the anxiety of not knowing if this is a “good day” or a bad one.
Following the principles of HealthTalk and what I also preach on my Patient Power radio shows, we networked with other parents of kids with this condition. We used Google to find the American Partnership for Eosinophilic Disorders and the guiding light behind a wonderful parent/patient organization, Beth Mays. Beth helped us connect with the handful of pediatric gastroenterologists who had a special research interest in EG. It was after consulting with one of these sub-specialists, Dr. Phil Putnam at Cincinnati Children’s Hospital, that Ruth finally got on track to getting well.
Today’s news is that after almost three months on a medication recommended by Dr. Putnam, endoscopy shows a 50 to 60 percent improvement – no bleeding in the stomach and, visually at least, much less inflammation. Biopsy results later this week will tell us more.
The medicine used was an old standby for cancer and Crohn’s disease, methotrexate, by weekly injection. Nausea can be a side effect, but we are controlling that with other meds, and Ruth now goes to school most all the time. Also, she has not been anemic for months, hence, no more infusions. She’s a feisty pre-teen girl, which poses other challenges.
My point in relating all this is to document what perhaps you have lived through too: a journey over months or years to get the right care for you. Also, if the condition is rare, it takes connecting with the true expert for that condition. As in Ruth’s case, medicines are often used in artful ways based on that expert’s own experience.
As for Ruth, I believe we are definitely on the right track, and I am thankful for the guidance from Beth Mays and caring local healthcare providers who have agreed to team with Dr. Putnam back in Ohio. I wish for you the same kind of powerful team and good result.