It was like a stranger had moved in. That is how dramatically little Jonah Henrikson’s personality changed overnight.
“He went to bed a happy, funny boy who had an easiness about him and he woke up anxious and acting so strangely,” says mom Kerry Henrikson.
The four-year-old Sarnia boy repeatedly asked the same question. He obsessively felt his face and rubbed it raw.
His parents were alarmed but their doctor wasn’t overly concerned.
When Jonah’s anxiety deepened and vocal tics developed, the Henriksons sought the advice of every professional that made sense. Initially, they suspected their son had suddenly developed obsessive compulsive disorder (OCD).
“It totally changed him,” said his father Chris.
“It literally consumed him,” said his mom. “He spent months feeling like he had to use the bathroom all day long. He had bizarre fears and he was hyperactive. A drop of water on him would send his anxiety sky high.
“One of the only things we could do to give him peace was set him in front of a video game.
“It was very difficult,” she said quietly.
A year went by while the Henriksons sought help. They saw pediatricians in Sarnia, they travelled to London and Hamilton for specialists. They spoke to a psychiatrist, then a behavioral therapist and an occupational therapist.
Jonah was diagnosed with obsessive compulsive disorder, generalized anxiety and sensory processing disorder. He was prescribed Prozac.
But it made little difference, and Kerry had a deep sense something else was at the root. “I’d lay there at night and I’d cry,” she said. “We were just being bounced from one doctor to another.”
While mining the Internet about Prozac a blogger suggested Jonah’s problem could be a little understood autoimmune condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.)
The blogger had a child diagnosed with PANDAS, which develops in susceptible children who have a common strep infection. In some cases, the body mistakenly attacks the basil ganglia, the part of the brain that controls emotion and body movement.
Kerry remembers feeling excited because Jonah’s symptoms fit PANDAS perfectly. But she could not convince a doctor it might be true.
“I believe PANDAS is underdiagnosed and under treated,” she said. “It’s hard to find help. It’s like nobody wants to go out on a limb and say this could be true.”
Finally, 18 months after Jonah became ill, the Henriksons found a doctor in Chatham-Kent willing to prescribe the antibiotics that PANDAS responds to.
In three days they had their son back.
“Obviously, it was such a relief to see that unbelievable change,” said Chris. “He was completely well.”
Since Jonah’s diagnosis and improvement, his eight-year-old sister Lena and four-year-old sister Marin also developed PANDAS symptoms.
“Their immune system is compromised by an infection and it’s like a switch is flipped,” said Kerry.
But, happily, the family got help much more quickly.
Kerry believes there could be a genetic component to PANDAS but not enough research has been done. While the National Institute of Health in the U.S. acknowledges PANDAS and Ontario’s OHIP covers medication for it, little is being done to understand PANDAS and educate the public, said Kerry.
She has co-founded a not-for-profit organization called Pandas/Pans Ontario with the help of another Sarnia family impacted by the condition.
“There are parents all over the world who often go years without a diagnosis,” said Kerry.
“We want to educate the public and support the families. PANDAS is uncommon but I don’t believe it’s rare.”
PANDAS/PANS Ontario is holding a garage sale from 8 a.m. to 2 p.m. on Aug. 9 at 1649 Murphy Rd. to raise money for an information night Oct. 18 at Pathways to hear a prominent mom, author and PANDAS advocate named Beth Maloney.
Monthly PANDAS support groups have also started in Sarnia.
For more information, contact Pandas/Pans Ontario on Facebook at ppontario Facebook or call 519-381-7120.
– Cathy Dobson