Prepared for the unexpected: How Henri beat C. diff

Henri after being treated for C. diff
Henri and his sister, Lucienne

From the time he was born, Henri has been very reactive — to everything.

As a baby, he was allergic to milk and soy, which led to weeping eczema all over his body. His allergies meant frequent ear infections and sinus infections.

As a toddler, he was anemic and underweight. He had two urinary tract infections (UTIs) with fevers.

At age 3, he had a circumcision because of the repeated UTIs.

At age 4, a sinus infection spread to his eye orbit. Every sunscreen on the market gave him (and still gives him) a rash.

At age 5, a bug bite on his ear led to a cartilage infection that required antibiotics.

Suffice it to say, I am always prepared for the unexpected with Henri.

At age 6, during the summer of 2016, Henri had some swelling above his right eye. I couldn’t find the cause, but his eye was starting to swell, and given his storied history, I was concerned.

I watched and waited, but as the swelling got worse and spread to his eye, I decided to take him to the urgent care near our home in Rhode Island. They said it was absolutely necessary to treat with antibiotics because of the risks associated with orbital cellulitis. I’m always careful not to over use antibiotics, but I checked with two other doctors, who both insisted it was absolutely necessary, even though we thought the swelling was probably from a bug bite at his hairline.

Henri with bump on eye before being diagnosed with C. diff

Exactly one week after Henri finished his course of antibiotics, we were 20 minutes into the two-and-a-half hour drive to my parents’ house in New York to celebrate my daughter’s birthday, when Henri said he needed to use the bathroom immediately. I ended up having to stop 4 times on the way to New York for him to use the bathroom.

That night he developed a fever of 102.8 and I knew right away that something was wrong. This was not just a bug bite.

Clostridium difficile or C. diff is an infection that causes debilitating diarrhea and is often prolonged with antibiotic use.

I immediately called Henri’s pediatrician, who said to give it two weeks before getting concerned. Three weeks later, Henri was still going to the bathroom at least 5 times every day with very loose, watery stool. The doctor ordered a culture, not expecting to find anything. But I was not surprised to get a phone call from her at 11:15 that night. It was something. Henri had C. diff.

Meanwhile, Henri had started first grade with active C. diff. — embarrassed and uncomfortable. Over the course of the next several months, he completed two courses of antibiotics, with a relapse in between, a course of a different antibiotic, followed by a relapse, and was going to start a second course, when I asked for a referral to a pediatric gastroenterologist.

We had seen a urologist at Boston Children’s at Waltham for Henri’s circumcision and had been very impressed, so I called Boston Children’s Hospital right away, and they worked him in for an appointment a few days later. Dr. Lori Zimmerman performed an endoscopy and colonoscopy to rule out any underlying gut issues and recommended we consider FMT. She referred us to Dr. Sonia Ballal.

Fecal microbiota transplantation (FMT) is prescribed as an effective alternative to long-term antibiotic use in treating infectious diseases such as C. diff. The procedure, which is performed under anesthesia, delivers pre-screened, healthy human donor stool to a patient via colonoscopy or by nasogastric tube.

Dr. Ballal met with us and gave us the news we were hoping for: Henri was a perfectly uncomplicated candidate for FMT, as he had no underlying health issues; his C.Diff. was simply from the antibiotics.

After enduring six months of meds and relapses, Henri underwent the transplant in March.

He missed 22 days of school that term. It was a difficult, frustrating, scary time for the whole family, particularly as there wasn’t much information out there about pediatric FMT. Medications were expensive, keeping up with schoolwork was hard, and making sure we didn’t put other kids at risk of infection was challenging.

Henri in the hospital for C. diff infection

Although it took a while for his bowels to normalize, Henri is now a happy second-grader who no longer has C. diff. We feel lucky to be on the other side of this experience, and to have had such support along the way — from the team at Boston Children’s, Henri’s school nurse and first-grade teacher, our primary pediatrician and our families. And we feel so, so grateful that FMT was available — for us, the procedure was truly a game changer.

To learn more about FMT, email FMT@childrens.harvard.edu.