Gwenyth was diagnosed right around her first birthday, but her condition actually began right after birth.
“She started to have seizures within 24 hours of being born,” said Gretchen. “I was advised by doctors neurologist that she was not an epileptic, that she was just having neonatal seizures.” Since then, Gwenyth has experienced more than 60 seizures, but thanks to medications and the switch to Cleveland Clinic, Gretchen said she has the tools to stop her daughter’s seizures.
Gretchen said neurologists gave her a runaround in the beginning. Because Gwenyth was so young, they didn’t want to attach a diagnosis of epilepsy to her just yet. Eventually, Gretchen made an appointment at the Cleveland Clinic, where they did give the official diagnosis that Gwenyth indeed had epilepsy.
Having such a young child with epilepsy has become a challenge for Gretchen, who is a single mom trying to cope with a tough situation.
“I actually have lost a couple job positions due to her condition,” Gretchen said. ”Being that I am a single mom, I have applied for assistance. I am not proud of having to use medical assistance, but I have to do what was best for Gwen. I am not able to work a 9-5 job because I only allow family to watch her while I am working. I am currently working part-time.”
There are several medications that Gwenyth takes that help control the seizures, but they have an awful side effect.
“She has grand mal seizures and has been on several medications that can impede an infant’s development,” she said. “She has had to work through muscle weakness and medication side effects. Gwenyth is currently working with an occupational therapist, and that has helped amazingly.”
In some cases, children can grow out of the condition at puberty, which makes it a waiting game. In Gwenyth’s case, no one can make the call, and Gretchen said some doctors were perplexed because of the types of seizures and Gwenyth’s young age at the onset.”
“Unfortunately, children and babies make up the largest group that are diagnosed with epilepsy,” Janet Mau from Mahoning Valley Epilepsy said. “Seniors make up the second largest.”
Since so many children are diagnosed, Mau’s organization decided to kick off a support group for parents and children. On Nov. 19, from 9 a.m. to 12:30 p.m., a new support group will meet at the Austintown Public Library on Raccoon Road. The program will feature professionals who can offer advice on epilepsy.
“The program is designed for the parents of children with epilepsy,” Mau said.
In the meantime, mothers like Gretchen have one thing in common. They want to get the word out.
“My message to others is to become educated,” she said. “Do not be afraid of epilepsy or seizures. Epilepsy is one of least understood medical conditions and it is time to become aware. From babies to teens to adults, epilepsy has no discrimination.”
Photos special to the Town Crier
Nineteen-month-old Gwen McGarry of Poland goes through EEG testing at Cleveland Clinic, where she was diagnosed with epilepsy in March.