One mother's story: How strep throat attacked my child's brain

Maura Heckmann and her son, Chris

Eleven-year-old Chris Heckmann was healthy and in good spirits when his mother, Maura, left him with friends for the night. But when she returned, 24 hours later, her son was unrecognizable. Stricken with paranoia, he refused to eat and paced around the family room, fear in his eyes.

At first, doctors thought Chris had obsessive-compulsive disorder (OCD). But he was ultimately diagnosed with PANDAS, a controversial neuropsychiatric disorder thought to be related to routine childhood strep infections. Here, Maura tells the story of her son’s rapid decent into illness, and his road to recovery.

by Maura Heckmann

My son had always been a healthy, happy, funny and articulate boy. He played sports, had lots of friends and never had any psychiatric issues. Then in June 2008, when my husband and I were on vacation in Maine for my birthday, we got the call that would change our world. We had left our two older kids with their grandparents, and Chris, who was 11 at the time, was at a friend’s house. It was 2 a.m. when he called, complaining of a sore throat. He insisted on coming home, so we arranged for his grandparents to pick him up. When my husband and I returned the next day, we found a completely different person in my son’s place. Chris had fear in his eyes, and was exhibiting a lot of strange activity, included pacing around the room and hiding behind the bar in the family room. My heart sank when I saw him. It was like my son was gone.

The next day Chris was even more withdrawn. He wouldn’t come near us or eat or drink anything. He said he was afraid the chemicals in his food might hurt him. As a nurse at Children’s Hospital Boston, my experience told me that something was very, very wrong, and I took Chris to the emergency room. With tears in my eyes, I explained to the triage nurse that my son seemed to have a break with reality, an extremely sudden onset of severe anxiety.

The next month was a living hell as we tried to figure out what was wrong with Chris. His paranoia got to the point where he wouldn’t eat anything we gave him, and he had to buy and prepare all his food. If we touched anything in the shopping cart that was his, he wouldn’t eat it. He stopped bathing or brushing his teeth. He refused to see any of his friends and stayed inside. When it rained, he kept his mouth shut and tried not to breathe. On one doctor’s visit, they wiped his arm with alcohol before drawing blood. He freaked out and wouldn’t use his arm for days. We went outside to play baseball, and he just let the ball hit him instead of using his arm to catch it. It was heartbreaking.

We brought Chris to every psychiatrist, neurologist and specialist we could. In the back of my mind, I started suspecting that Chris had contracted strep throat prior to the onset of the psychiatric symptoms, because of his complaints to us over the phone. As I researched the link between strep and OCD, I found some information about pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). As a nurse practitioner, I had heard about PANDAS in grad school, but thought, “What a weird thing. I’ll never see that.” The theory is that PANDAS occurs when your body’s normal immune response to strep bacteria becomes misdirected and attacks your brain. Through my research, I learned that PANDAS is a controversial diagnosis as there’s limited supporting evidence, so far. There’s no lab test for PANDAS, which makes diagnosing problematic. For more detailed information on PANDAS, click here.

Because of my research, both my husband and I began to believe that Chris was suffering from PANDAS, but it took weeks to verify because Chris wouldn’t let people near him. It took a month to get the first throat culture and we were finally able to tell that he had a recent strep infection. Chris began taking ongoing, prophylactic antibiotics that would prevent any additional strep infections, reducing the risk of further injury to Chris’s brain.

Chris was deathly afraid of medication and refused to take anything we gave him. We were finally able to coerce him into taking anti-anxiety medications after an hour and a half with a nurse practitioner. After that first time, Chris was able to take the medication, but it had to be part of a routine: We had to give it to him in a certain way, with a certain drink, at a certain time. Within a week, he was able to take the antibiotics as well. Finally his symptoms began to subside.

As the antibiotics don’t work on the psychiatric symptoms, Chris started seeing a psychiatrist. But very quickly, Chris returned to his normal, happy self. On the advice of Chris’s psychiatrist and his pediatrician, Chris is now only taking prophylactic antibiotics. We have the option of taking Chris off of medication in two years, but my husband and I said, “Absolutely not!”  We’re going to wait until he’s 18 years old. From what I know about PANDAS, a lot of people stay on medication through adolescence. We’re doing everything we can to ensure he won’t get sick again (we even had his tonsils removed after the PANDAS diagnosis as a strep preventative).

Chris has now been on antibiotics for just over a year. He’d prefer to not take antibiotics if he doesn’t have to, but we didn’t want to take the risk this year. He’s absolutely fine now, back to playing sports and hanging out with his friends. I feel so lucky that Chris is back to his original health, but I do worry that he will get sick again. PANDAS turned my family’s world upside down. The reason I’m sharing my story is so that others will know more about this controversial illness. It is real, and it deserves more study by scientists so that it can be prevented. There needs to be more information out there so that other families have the chance to recognize and treat this illness and to get back to a more normal life.

Another mother shared her story about her son and PANDAS on NBC’s Today Show.