I've been writing this post for quite awhile ... editing here and there. Adding, mostly. Sorry if it rambles.
Sarah's saga started back in May, while school was still in session. She appeared thinner and had dark circles under her eyes. I thought maybe she was dehydrated and encouraged her to drink more water. Later she started complaining of abdominal pain - but not often - and she got her first pimple. Right in the middle of her nose. So I thought maybe she had early onset puberty. We had a menstruation talk in preparation but nothing materialized. Since the abdominal pains continued - sudden and strong - but only about once a week, we took her to the pediatrician.
Dehydration and puberty were ruled out. She had gone from the 75th percentile in weight to the 25th. She had a urine test and a blood test. The urine test results came back that she was slightly anemic and that she didn't have a UTI, but there were signs that it might become one, so she was given antibiotics and put on a multivitamin with iron.
Results from the blood test came back negative for Celiac disease, Crohn's disease, and some other things. But she was still having abdominal pain, occasional vomiting and diarrhea. And she was obviously not her energetic usual self. Easily fatigued and not interested in her usual activities, even though by this time summer vacation had officially started. The doctor ordered another round of urine and blood tests and also requested a stool sample.
Then came the diagnosis of a
C.diff infection. Her symptoms were textbook and we were relieved to be treating the right thing with the right medication, Flagyl. She also started a probiotic called Florajen.
During the course of Flagyl, Sarah complained of a sore throat. We went to the doctor again, expecting strep, but she was diagnosed with
herpangina, common in the summer months, and even on the local news as being prevalent in the area. In younger kids, it's commonly referred to as Hand, Foot & Mouth Disease. There can be ulcer sores in the mouth and blistering on the palms and feet. There's no treatment given for that - just Tylenol or Motrin for pain, and her throat pain stopped relatively quickly.
After her Flagyl was finished, we went back to the doctor for a follow up visit with another stool sample. This time, the C.diff appeared to be gone, but she was still anemic and still had a few lingering mouth sores. They recommended a new yeast-based probiotic called Florastor. She was also still having fatigue, diarrhea and occasional vomiting, so we got referred to a pediatric gastroenterologist.
After her initial exam with the gastroenterologist, Sarah needed an upper endoscopy and a colonoscopy with biopsies. Four days later, she was under general anesthesia for both procedures which took less than an hour. The doctor took many interior photos of her digestive tract and concluded that Sarah had
Crohn's disease, an auto-immune disease of the digestive system, even though earlier blood work for that came back negative. The mouth sores from herpangina may have in fact been a Crohn's symptom, as the disease can strike anywhere in the digestive tract, from the mouth to the lower bowel. She was put on a steroid to reduce inflammation and Prevacid for stomach irritation.
Sarah followed these procedures with a tuberculosis skin test and an upper GI with small bowel x-ray series to help determine which medicines might work best for her. It was a five-hour process to drink the barium "shake" and wait for the fluid to pass through her system, with x-rays every 30-45 minutes. Her TB skin test was negative, as expected.
After about two months on the steroid, she had gained almost 15 pounds. Her low at the time of the scopes was 59 lbs. and, as of last Friday, she's up to 74 lbs. and in the 50th percentile. Some of her energy has returned and she's no longer having diarrhea or vomiting. She does deal with constipation, hiccups, heartburn, and frequent trips to the restroom.
She is now on a maintenance medicine called Azathioprine and on a reduction plan for the steroid. She continues to take iron, a probiotic, a children's multivitamin, and Prevacid. Hopefully in a month or so, we'll be able to drop the steroid completely and she may lose a little water weight. Her cheeks have swollen to the point that she has "chipmunk cheeks" but luckily her friends at school are kind and don't tease her about it. We have to get blood drawn every two months or so. Her current diet does not allow popcorn or any ultra-fibrous foods. Other than that, she can eat like her siblings during remission.
The more people we've told about her diagnosis, the more people have said that someone they know has Crohn's. However, most of these cases are in adults. We take comfort in the fact that Sarah's gastroenterologist also has a daughter Sarah's age and can say "if it were my daughter..." with a relevant perspective. And yet another reason to be thankful that this house "waited" for us - our next-door neighbor, Ricky, has suffered from Crohn's for years. He's been on countless medications and even had a portion of his bowel removed about six years ago. He has a great outlook and lots of experience and is willing to share all of the ups and downs.
Her gastro doctor, pediatrician, and we are all pleased with her progress this summer. We hope this disease will stay in remission for a long time and flare-ups will be few and far between. We'll keep you posted...
Please send me any questions via email and I'll do my best to answer them.
