Encephalitis pediatric patient stories

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact the Pediatric Neuro-immunology Program

Things are looking up

Encephalitis had Collin Goodchild's parents terrified and his doctors and nurses searching for answers.

Not all seizures in children are violent. Some could even go unnoticed. Others might cause a child to go instantly dark, like an unplugged lamp—unable to respond and staring into space. That's what happened to Collin Goodchild on July 1, 2008, when he was almost 6.

After a second seizure almost 10 days later, Collin came to Boston Children's, unable to walk in a straight line or follow a moving finger with his eyes, and his arm was jerking uncontrollably. "Our minds were racing," says Collin's father, Mark. "It was a complete nightmare."

Boston Children's doctors diagnosed Collin with encephalitis, an inflammation in the brain that can be caused by a number of things, including viruses, bacteria and the body's immune system turning against itself.

Fortunately for the Goodchilds, encephalitis—which is often confused with the more dangerous bacterial meningitis—is rarely fatal in the United States. But identifying its cause can be a real challenge. There are a few tests that can recognize certain causes, but often doctors and families never know for sure what's behind a child's encephalitis. "The doctors tested Collin for everything they could, but everything was coming back normal," says Mark. "I was glad he didn't have the bad things he was being tested for, but it wasn't giving us any answers, so it was kind of bittersweet. "

Encephalitis is known to cause symptoms like fever, confusion and difficulty walking and talking, but these often subside over time. Unfortunately, there's no way to know how long this might take, or what, if any, long-lasting effects the encephalitis might lead to down the road. "The doctors can tell you, 'We hope he'll talk again. We hope he'll walk again. We hope he'll eat on his own,'" says Mark. "But they don't know—that's what's so scary."

The weeks following Collin's diagnosis were a nightmare for Mark and Suzette. Collin's arm-jerking developed into a full-blown movement disorder, with episodes of uncontrollable thrashing and screaming. The doctors finally brought the disturbing episodes under control, but only by medicating Collin very heavily.

Soon, his speech began to dry up. "He could still use a few words, like 'yes' or 'no', but other than that he could barely talk," says Suzette. "And I don't know if he was following instructions either. You'd ask questions, and he wouldn't do things. It was like he didn't understand. The doctors would come in and ask him to raise his hand, wave, or blink, but he wouldn't do it. It was almost like he was somewhere else."

A few days later, Collin lost the ability to walk. Shortly after that, he couldn't even swallow on his own and began receiving all his nutrition through a feeding tube inserted into his stomach.

Mercifully, after three or four weeks, Collin's symptoms started to subside as his brain began its long, slow healing process. He began to swallow again, so he could get some of his nutrients by drinking small amounts of liquid. It was encouraging, but he was far from out of the woods. He still couldn't walk or communicate, so began extensive physical, occupational, speech and feeding therapy.

Fortunately for children like Collin, young brains are not yet fully developed, so they're strong and adaptable. But it's nearly impossible to say how much of the brain will heal—once the medical emergency passes, you can see a light at the end of the tunnel, but no one can say what you'll find when you get there.

So the Goodchilds kept doing everything they could to get Collin well. "We went anywhere and everywhere we needed to go," says Suzette, including kindergarten, a prospect his parents would have never deemed possible a month earlier. Collin spent about an hour each day in school, working with an aide and soaking up his surroundings. He still couldn't communicate, and received a majority of his nutrients through a feeding tube, but he was walking again and slowly rebuilding his strength and dexterity.

Flash of insight


Mark Gorman, MD, neurologist, connected the dots between a patient's encephalitis and that of a group of women with ovarian tumors.

On the day in December that would change Collin's life, his neurologist, Mark Gorman, MD, woke up suddenly in the middle of the night with an idea. He remembered a study he'd heard about at a conference that described a subset of encephalitis patients with movement disorder, just like Collin. It wasn't an obvious association to make, because these patients were women with ovarian tumors, but Gorman focused on the similarities. He quickly located and contacted the doctor who had first identified this subset, and described Collin. The doctor agreed that it sounded like the same set of symptoms, and identified them as indicators of a certain type of encephalitis known as anti-NMDA receptor encephalitis.

Things moved quickly after that. Gorman sent a sample of Collin's blood and spinal fluid for testing, and sure enough the results came back positive for anti-NMDA receptor encephalitis. Finally, after months of uncertainty, Collin's phantom malady had a name, and it was something Gorman could treat. Collin was placed on an intensive three-day round of steroids, and monthly sessions of a four-hour-long infusion of a blood product called IVIg.

Turbocharged recovery

"Even after the first treatment, we felt things were getting better," says Suzette. "And then in February, he had his second IVIg and his gross motor skills started to click, just like that. We had him on a handbike, and his arms and legs were just going."

One day in March, she was in the kitchen and Collin was in the living room with his younger brother Colby. "They were just sitting there, and as usual Colby was doing all the talking since Collin couldn't," says Suzette. "But then I heard a voice and I said, 'Oh my God, that's not Colby, That's Collin!'" Suzette called Mark and told him to come home.

"The kids were sitting at the table, and Colby was all excited," says Mark. "He'd say 'Dad, watch this…Collin, say circle.' And you hear this little voice: 'cir-cle?' And Colby would say, 'Collin, say star,' and he'd say 'star.' He said square, he said triangle. It was unreal."

Two days later, Collin was picking cashews out of a bag of trail mix, repeating the word cashew. "We were all laughing," remembers Suzette. "We just thought 'This is a miracle. We've been waiting months for this.'" Later that week Collin went in for his third IVIg and came out speaking full sentences. The room exploded in joy.

From then on, Collin's turbocharged recovery took off. He started responding to what people were saying to him, and asking questions of his own. "It was by far the most amazing thing I've seen," says Gorman. "I just asked him normal stuff I'd ask any 5 or 6 year old." Most thrillingly, his knowledge was intact, and words flooded back into his vocabulary. Kitty Petty, the Boston Children's education consultant who helps Mark and Suzette with Collin's academic program, says the fact that Collin retained so much from before the encephalitis is very significant. "He's not just parroting words, he's recognizing things and identifying them," she says. "These are important cognitive activities."

At school, Collin began to be tested on writing, numbers, shapes and colors. More people than he will ever know watched in delight as he sailed through the goals that were set for him.

Now, when they're not snowboarding in Maine, Collin and Colby are classmates in first grade. "People take so much for granted," Suzette says. "When something like this happens, it sets you back, and makes you realize that if you have faith, and a strong family, and the community that we do, that you can get through it. And we did. We really did."

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

Close