When he was just 6 months old, Jennifer Dickenson’s son, Robbie Jackson, was diagnosed with Cerebral Palsy with left-sided hemiplegia.
“Basically,” she explained, “Cerebral palsy is a catch-all diagnosis that means there’s brain damage somewhere and the other part means weakness on the left side.”
Prior to the diagnosis, Dickerson had noticed that little Robbie wasn’t using his left side at all.
“He wasn’t using his left side to reach for things; he wasn’t crawling and we were having a hard time getting him to sit up on his own,” she recalled.
The neurologist who made the diagnosis discovered that there was scaring on the right side of Robbie’s brain that had probably been caused by a stroke in utero.
“He told me it was no big deal and that he saw that kind of thing all the time and that physical therapy would probably help,” Dickerson said.
The doctor also told her that if Robbie didn’t have any seizures by age 3, he’d probably never have any at all.
“But he had a grand mal seizure two months before his third birthday, and another on his fifth birthday this past March,” she said.
As the seizure activity increased, doctors added epilepsy to Robbie’s diagnosis.
He was scheduled to spend several days in Mary Bridge Hospital in September for tests to locate the source of the seizures. And the doctor was discussing the possibility of brain surgery to remove the part of his brain that was causing the seizures.
“That would mean he wouldn’t have any more seizures but he’d still have a disability and his cognitive reasoning would stay at age 1 or 2,” Dickerson said. “That’s a life-long quality of life issue.”
Robbie started kindergarten in September, just a few days before he was scheduled for the trip to Mary Bridge.
“He likes to ride the bus and play with his friends and he’s good with his peers as long as they play to his age level.” Dickerson said. “He walks with a walker and cruises furniture and scoots on his butt like a toddler.”
He also loves to ride the special bike that the people at KP Cares helped procure for him with funds from a bake sale.
But shortly before the Mary Bridge appointment Robbie, had a major increase in seizure activity. “We had to go into the hospital early and stayed for a day and he was hooked up for an EEG the whole time and then discharged with additional seizure medication,” she said.
The night he was discharged, Robbie began having “really aggressive seizure activity including small grand seizures,” so Dickenson called 911.
“When we got back to Mary Bridge he had a five-minute grand mal seizure in the emergency room and it took them almost two full days to stop the seizures,” she said.
Robbie spent five days in the hospital, four of which were on an EEG. He was discharged on Sept. 12.
As of press time, Robbie’s neurologist “is going to present (his case) to the Child Epilepsy Board at Seattle Children’s Hospital because he is having epileptic spikes coming from both sides of his brain,” Dickenson said. “Apparently that’s very unique.”
The seizures are under control, but the neurologist wants to get more opinions, she said, “because they really do not know what to do.”
In the course of all this, Dickerson is studying for a bachelor’s degree in business with an emphasis on healthcare management. And she’s looking for a new car because “the engine on mine blew the head gasket among other things on my way home from the hospital.”
She’s also trying to stay focused on helping Robbie.
“You have to get past the anger and the self pity and feeling sorry for yourself and your child so you can help your child become a physically productive person,” she said.
She’s grateful to her current husband, Jake Dickerson and to her parents, Debbie and Joe Dilley for their love and support, and to the people of the Key Peninsula community.
“It’s just a great community,” she said. “And I’m trying to get the word about that strokes in utero happen. I just want people to know about it so they can be aware and maybe help others.”