People and Places

“Please kill me, Mama” — One mother’s struggle with PANDAS

Caleb was born a healthy, happy baby, but when he was 5½ years old, he contracted a strep throat infection. He was treated with antibiotics for 10 days, and we didn’t think anything more about it.

Caleb started kindergarten that fall, and we were confident that he would do well, especially since he was writing, counting, speaking French and English, and was very excited to go. A month into school, we noticed some changes in his behaviour: he no longer wished to attend school and was becoming aggressive; he didn’t want to be in anything other than his underwear. I purchased new clothes, disciplined him, comforted him, but nothing seemed to help. My husband and I thought it was just a phase he was going through and forced him to get dressed and go to school.

During the course of the first year, he was treated for strep throat a couple more times. At this point, he was withdrawn in school, afraid of his horse — and animals in general — and he didn’t want to play with his friends. Needless to say, we were not sleeping much. We were really becoming frustrated trying to figure out what was going on with him.

It wasn’t until we noticed his obsessive-compulsive-disorder-like behaviours (OCD) that we decided to take him to see our family doctor. That led to a recommendation to see a psychologist. At the same time, I went for counselling (I was losing my mind trying to figure out what I had done wrong). We were a normal family: I had a great husband and, in addition to Caleb, two wonderful daughters. I was working from home at our ranch in the Gatineau Hills. In my heart, I knew there was more to all this — I just couldn’t figure it out.

By the time Caleb was 7½, he was having visual hallucinations (he literally saw sharks in our pool and snakes and spiders everywhere in the house), had severe sore throats, and suffered from something he called “ear-grains” — like migraines in his ears.

Strangely enough, when we would take him to the hospital, they would say there was nothing wrong with him: no fever, swelling, or symptoms of strep. They would swab his throat, leaving us to take home an obviously severely sick child who apparently wasn’t sick! Three days later the doctor would call and say: “Caleb tested positive for strep. Go to the pharmacy to get antibiotics that we’ve prescribed by phone.” This happened so many times, it was like living a nightmarish version of the movie Groundhog Day.

Another thing that struck us as odd was that when Caleb consumed the antibiotics, the bizarre behaviours he had been exhibiting seemed to disappear for a couple of weeks. Regardless, we had exhausted all possible angles: from abuse to bullying to psychologists and specialists.

On a Saturday night in February 2015, an episode of CTV’s W5 caught our attention: a family from Chatham, Ontario, was living the same nightmare we were, except both their children were exhibiting the same symptoms as Caleb: their children had the same OCD behaviours, hypersensitive skin, visual hallucinations, anxiety, sleep and appetite changes, outbursts of rage, emotional changes, vertigo, ticks, and much more. Wendy Edwards, a doctor in Chatham, had diagnosed them with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS). I started to cry and ran to the computer. I found the family and called them.

What a relief! It was like the heavens had opened up. Our many prayers had been heard. Dr. Edwards, though, had a waiting list of two years before she could see our son.

That was when we began our journey to find a doctor who could treat PANDAS, the treatment of which is antibiotics for approximately a year. We saw four specialists after that Saturday night. All of them recognized PANDAS but did not recommend treatment with antibiotics. The test trials for PANDAS were done in the U.S. by Dr. Susan Swedo, who is chief of pediatrics and the developmental neuroscience branch at the National Institute of Mental Health in Washington, D.C., from which many success stories have followed. All the doctors we saw wanted to treat our son as a mental-health patient. We were unconvinced.

Finally, we were put on a waiting list to see Dr. Edwards, all while Caleb’s infection worsened to the point where he told us: “I want to die, please kill me, Mama.” He was so sick; it was crushing for us to see him suffering like that. We continued to pray for, love, and encourage him.

Finally, at the end of July 2015, Caleb began treatment with a small dose of antibiotics. On the third day, he suddenly came back to life. His energy level returned and we went for a walk, which he hadn’t done for months. He even asked to play a board game and was able to count to 120. His aggression, “ear-grains,” vertigo, and visual hallucinations disappeared. He slept all night without any nightmares.

Caleb is currently into his seventh month of treatment and has no issues with clothes. He’s doing great at school, and he no longer suffers nightmares, headaches, sore legs, or anxiety. Because of the types of medication, we’ve had some mini-relapses, but switching medications has remedied any setbacks. We are so grateful to Dr. Edwards for her courage to treat this disease and not just the symptoms. We hope and pray that other families will not have to live what we have lived through and that maybe, just maybe, Caleb’s story will help another child get real help.

Susie Wiggins-Fournel lives and works in Wakefield, Quebec, and will not stop until everyone knows about PANDAS