Occupational therapy aids patient’s recovery after rare epilepsy diagnosis
Isa was a pretty typical 10-year-old until he suddenly suffered from a seizure at school.
He was quickly transported to CHOC Hospital in Orange, where he and his family embarked on a long medical journey that was full of ups and downs – leading to an eventual diagnosis of a rare seizure disorder that requires ongoing care.
Despite all the challenges and scary moments, Isa’s family celebrates his triumphant recovery.
“We advocated for Isa to receive occupational therapy while he was in the pediatric intensive care unit (PICU),” says Iram, Isa’s mom. “The CHOC occupational therapy team helped us navigate the journey and connect as a family even while Isa was in a critical state.”
The occupational and physical therapists and speech and language pathology specialists that make up CHOC’s rehabilitation (rehab) services team are dedicated to providing complete care to patients, guiding them to the best possible recovery.
Paired with the expert and compassionate care from CHOC’s neurology, rheumatology, child life and critical care teams, CHOC’s rehab team helped Isa find his way back to his creative and funny self.
“One of the greatest moments of Isa’s entire medical journey was seeing Isa feel OK enough to bicker again with his brother, just like they always had,” says Iram.
A long journey, a rare FIRES diagnosis
After that first sudden seizure, Isa had several more and even suffered from cardiac arrest — causing his family to fear that they would lose him. Isa was transferred to the pediatric intensive care unit (PICU) at CHOC under the care of Dr. Feras Hares, critical care fellow, where he continued to have tonic-clonic seizures every few hours.
The team at CHOC’s Neuroscience Institute advised Isa’s family that he should be intubated (when a tube is placed in a patient’s throat to breathe for them) so he could receive stronger medications to calm his brain.
“One of the scariest days in Isa’s whole CHOC journey was watching him be intubated,” says Iram.
Isa remained intubated for a few weeks and was monitored via electroencephalogram (EEG) – a test that records the brain’s continuous electrical activity by using wires placed on the child’s head. Unfortunately, the test showed that Isa was continuing to have frequent seizures during this time, but the CHOC team didn’t know why.
Experts from seven CHOC specialties banded together to run every test possible to discover what was causing Isa’s sudden seizures, but they all came back negative.
Eventually, CHOC experts diagnosed Isa with febrile infection-related epilepsy syndrome (FIRES), an extremely rare condition that affects approximately one in one million children. Because of this condition’s rareness, there are a lot of unknowns about its treatment and long-term impacts.
Fortunately, with medications and care, Isa was able to get off his intubation tube. But because Isa’s brain had been under so much stress for weeks, he had to overcome many obstacles when he started waking up and getting oriented with his surroundings.
Rehab plays a huge role in recovery
That’s when CHOC rehab stepped in.
CHOC’s physical, speech and occupational therapy teams were instrumental in Isa’s recovery.
The physical therapy team helped Isa regain his walking skills after his legs weakened from being in bed for so long.
The speech therapy team helped him slowly relearn how to swallow, feed, remember and process.
The occupational therapy team helped facilitate Isa’s therapies so he could relearn how to care for himself again.
Iram remembers being amazed by Isa’s progress. While still at the hospital, he went from not being able to sit up unassisted, to using a walker to go to the bathroom, to walking unassisted to play foosball in the recreation room.
Credit to CHOC’s occupational therapy team
“The CHOC occupational therapy team holds a special place in our hearts. They helped us navigate Isa’s recovery journey,” says Iram. “They reassured us that everything was going to be OK if we just met Isa where he was at.”
The team helped make Isa’s recovery fun so he wouldn’t realize he was working. Iram remembers when Iffers (Jennifer), one of Isa’s occupational therapists, encouraged him to ride his scooter board along the hospital’s hallways to help regain his core and arm strength.
“We also have to credit CHOC’s child life specialists for bringing Isa games and toys he would enjoy,” says Iram. “Lois the therapy dog also played a big role in bringing comfort to him.”
Today, Isa is thriving. He has adjusted well to his new lifestyle of daily medications and will continue to visit CHOC for monthly infusions and appointments with Dr. David Adams, pediatric neurologist, and Drs. Andrew Shulman and Amy Gaultney, pediatric rheumatologists.
Isa just celebrated his 11th birthday and is proud to show off his new pet — a bearded dragon. He also has gotten back to the activities he enjoys like playing golf and board games and telling a good joke.
“As scary as this has all been, I am so grateful for the staff at CHOC that helped us get through this,” says Iram. “Every doctor, nurse and rehab therapist that was invested in Isa’s recovery helped us in their own way.”
Learn more about CHOC’s rehabilitation services
Using a comprehensive team approach, our physical therapy, occupational therapy and speech and language pathology specialists work together to provide complete care for children of all ages.
