On a recent day in his Prineville home, 5-year-old Stryder Doescher was all smiles and play.
He made engine-revving sounds and crashed his Matchbox cars into each other on the coffee table. He rode his bike inside the house around the kitchen island. He helped his dad, Warren Doescher, make a snickerdoodle cake while chatting away about how the mixer works and what step comes next.
Then he walked up with his toy doctor kit to perform a routine check on his mom, Angela Doescher.
“May I listen to your heart, please?” he asked with such assuredness that it's obvious he's heard it many times before.
While Stryder seems like an average preschooler, in fact he only recently began to speak. And it's possible that in the future, he will lose that skill.
Since age 2, when an annual wellness checkup confirmed he wasn't hitting developmental markers, Stryder has been an unfolding medical mystery. He has since been diagnosed with a slate of health issues, several of them exceedingly rare.
He has Ehlers-Danlos syndrome, a genetic disorder. There are six types, but it's believed Stryder's is a rare one. It means he has stretchy skin and joints so mobile he can completely rotate his ankle so his foot is facing backward. A vigorous high-five can knock his elbow out of joint.
Another diagnosis, speech apraxia, is so severe in Stryder that Bend speech language pathologist Alicia Fox said few in her field have ever seen it. It's when there is a disconnect from the brain identifying a word to the mouth uttering it.
And Stryder has a rare form of epilepsy called Landau-Kleffner syndrome. The seizure activity causes language abilities to slip away. Smart, talkative children suddenly can't remember everyday words.
Without medication, Stryder experiences seizures throughout the night, sometimes micro seizures that occur every second, in the brain's left temporal lobe where language resides. Drugs can keep the seizures at bay. Without them, the language regression can eventually become permanent.
It's uncertain presently whether, and how, these conditions might be interconnected. But they mean the Doeschers are constantly traveling to doctors in Bend, Portland and beyond, searching for treatments to give their son a better life. Two months of intensive therapy in the fall of 2011 at the Mayo Clinic in Rochester, Minn., brought Stryder from grunts to four-word sentences. Soon, Stryder and his mother will travel to see specialists at the Greater Baltimore Medical Center.
The family is also raising funds to purchase a seizure alert dog that will be specially trained for Stryder. Whether dogs can detect seizures is debated, but Angela Doescher believes it could help the family know when Stryder's seizures are becoming more frequent, which signals that the medication is becoming ineffective.
The best prognosis for the future is there will be a way to manage some of Stryder's issues, such as the chronic conditions, and he will eventually grow out of the seizures. The worst is that he ends up unable to speak, joints so deteriorated and rubbery that he is trapped in a wheelchair.
“He has the potential of losing everything he has gained,” Angela Doescher said. “It's my biggest fear.”
Learning to speak
After that 2-year wellness checkup, what had seemed like a normal childhood changed rapidly.
Stryder started speech therapy. But by 3, his language hadn't improved. “Ba” and a sucking-from-a-straw face meant he wanted a drink. “Ya” was his word for dad.
“We were told over and over and over he would never talk,” Doescher said.
Many tests followed. Doctors believed Stryder could have autism. Then an expert tested him and concluded he definitely does not.
“That's kind of the way his whole story is,” Doescher said.
The family of four — Stryder has a 12-year-old sister, Kasiah — moved during this time from South Carolina to Prineville to be closer to Angela Doescher's family. Doescher now stays home with Stryder while her husband works for Consumer Cellular as a supervisor. When they arrived in Central Oregon, Stryder began seeing Fox in Bend at KidTalk Clinic, a nonprofit clinic sponsored by Oregon Scottish Rite.
Fox said roughly 5 to 10 percent of preschool-age children have speech-related issues. Only about 5 percent of these children have apraxia, and very few have it as severe as Stryder.
“The first couple of times I saw him, his speech was really significantly limited,” Fox said.
In other areas, however, Stryder excelled. Fox said he can easily group like items together or perform other visual tasks.
In an effort to help, Fox and several others suggested the family take Stryder to Dr. Michael Bell, a neurologist with Bend Neurological Associates. He connected them with the Mayo Clinic, where he had served as chief resident. Dr. Edythe Strand agreed to accept Stryder into an intensive language therapy program.
Doescher and Stryder spent two months there doing intensive speech therapy and undergoing tests.
One was a video electroencephalogram, or an EEG that is videotaped. Caregivers attached electrodes to Stryder's head so they could measure his brain's electrical activity. There, they spotted the seizures, some accompanied by physical movements and others that are sometimes called silent seizures: There is little movement of the body during these seizures, just a blank look on his face.
“He was sitting right next to me, having a seizure, and I didn't even know,” Doescher said.
Mayo Clinic doctors prescribed Keppra, a drug commonly used to control seizures. Soon, between the medication and therapy, Stryder went from grunts to complex sentences.
“He talked almost overnight,” Doescher said. “It was magical, just magical.”
Fox expressed as much amazement.
“It's a really rare opportunity that they were able to go,” Fox said. “Strand is the person who does research and writes articles and gives talks. She is the expert in this field. And they saw her twice a day for two months. And he came back and he was talking in three- and four-word sentences. It was incredible.”
Controlling the seizures
Numerous conditions can lead to seizures, from genetics to tumors to brain lesions during birth. Dr. Bell said epilepsy therefore can present a chicken-or-egg question in each patient: Is the dysfunction causing the seizures or are the seizures causing the dysfunction?
“In Stryder's case, I'm convinced the seizures are contributing to his dysfunction,” Bell said of his issues with language.
Yet Stryder doesn't have a classic case of Landau-Kleffner syndrome, Bell continued. Usually, a child who was fully speaking at age 4 or 5 suddenly starts forgetting language. Stryder struggled with speech from the start.
Another unusual aspect for Stryder is that he appears to be growing out of his medication.
In two out of three cases, Bell said, doctors can control seizures once they find the right drug for a particular patient. For the rest of those with seizures, there are usually other options, such as surgery or a nerve stimulation device.
“We are light years ahead of where we were in the '70s,” he said.
Stryder, however, has needed his Keppra dosage increased several times. He is now at the maximum. Another drug was added to the mix recently to calm his seizure activity while sleeping.
Left uncontrolled, the Landau-Kleffner seizures cause permanent damage to the language area of the brain. Bell is optimistic, but Doescher is concerned.
“He's been relapsing every three months or so,” she said. “He's at the maximum dosage now. Soon we'll have to switch, and there are only so many drugs to go through.”
It's the reason Doescher is interested in a seizure alert dog.
Already, Doescher has seen Stryder slip before when his Keppra dosage becomes too low. He starts subbing words for others he can't bring to the fore: Jack-o'-lantern becomes jack-o'-light. The farmers market becomes the moo market.
One day while making him breakfast, Doescher asked if he wanted a favorite, cottage cheese. He said, “What is cottage cheese?”
Another time, she told Stryder his dad would soon be home from work. “He said, 'What's dad?'”
“I don't think he actually doesn't know his dad,” Doescher said. “He just has forgotten what the word means.”
Karen Shirk, founder of 4Paws for Ability, an Ohio nonprofit organization that trains therapy dogs, said trained dogs can sense seizures before they occur. She said they detect chemical changes in the body in the minutes or hours leading up to a seizure.
Bell said not all research supports that. But Shirk said the organization's dogs have been able to help families.
The goal for some families, Shirk said, is to make sure the child is in a safe place before the seizure happens.
For Stryder, Doescher said the goal is to know when his seizures return, since the majority of them happen while asleep. Then, she will know when it's time to change his medication. She said some medical providers have recommended the seizure dog.
She hopes the dog will signal the family earlier than waiting for his speech to backslide.
“Every day I'm on heightened awareness,” she said. “Is he not hearing me or is he not understanding me?”
The family needs to pay $13,000 for the dog. The Crook County Middle School Sparrow Club has adopted Stryder, trying to help, and other area fundraisers are under way. Once they have the money, training will then take 11 months.
The visits with medical specialists also continue. Stryder's conditions might very well be related, experts say, but it's not certain yet how they all connect.
In the meantime, Fox said she is trying to teach Stryder some ways to communicate to others what is going on inside of him. Stryder is extremely eager to learn, she said, and tries his best.
“I think he's worried,” she said. “He knows he doesn't understand everything and he's so eager to please. That can be hard on a kiddo.”
So Fox is teaching him how to ask for help. “Could you show me?” and “Will you give me a minute to think?” are phrases they're practicing. They are also incorporating an iPad and sign language into the therapy.
For his part, Stryder wants to play. His new favorite character is Batman. The family is getting ready for him to start kindergarten in the fall.
“We want him to be able to run and play and have those childhood memories,” Doescher said. “Because as an adult, he possibly won't get to.”