[title size=”1 to 6″]Gwen’s Story[/title]
[dropcap]G[/dropcap]wenyth Leah McGarry was born on March 10, 2010, at St. Elizabeth Hospital in Youngstown, Ohio. She was a healthy 8 lb 2 oz. baby girl with perfect Apgar scores. Gwenyth was welcomed into the world by her mother, grandparents, family and friends!
Within 24 hours of birth Gwen began to have periods of duskness and apnea. She would turn completely blue due to lack of oxygen. Nurses and doctors in the mother and baby unit decided to have Gwyneth admitted to the Akron Children’s NICU at St. Elizabeth. We learned in a few short hours that she was having seizures. She was given antibiotics for any sepsis that might have been present. She had CAT scans, spinal taps, blood work, and EEGs.
Doctors confirmed that she had a minimal brain bleed; however, they felt that had nothing to do with the seizures that she was having. Gwenyth was put on phenobarbital and Dilantin. Doctors ran metabolic panels on her to see if she had a deficiency in vitamin B6. The neurologist advised us that she was having neonatal seizures and that typically children outgrow them. We lost count of the amount of seizures Gwen had her first month of life.
After a three-week stay in the hospital, Gwenyth was able to come home because her seizures were under control—or so we thought. As her mother, I thought, I’m going to have to give this little baby medications and have to worry every day whether she is going to have more seizures. I worried what the future held for Gwen.
After four days of being home during the Easter season, Gwenyth began to have seizures again. She was having so many seizures that her doctors could not control them and I was advised that she was in status epilepticus. They gave her Ativan to try to stop and break the cycle of the seizures. After several days, she was put on Keppra and gained seizure control—or so we thought, again.
We took her home with an apnea monitor and fears still present. As a new parent I was not worrying about changing diapers or having to be up all hours of the night; I was worried about whether or not my baby was going to have seizures and pull out of them.
Gwen would have periods when she wouldn’t have seizures. However, she was not meeting milestones, was always sleeping, had weak muscle tone and dystonia, had problems feeding, bowel trouble, and high irritability. She suffered regressions several times in her development. She is still working her way back.
Gwen started physical and occupational therapies right away. Several times we were advised that seizures are not that big of a deal and that she would grow out of them. This blew my mind, and I began to do research. Being in and out of the hospital for breakthrough seizures and status epilepticus sparked me to look elsewhere and to change her care to the Cleveland Clinic. Thank you to a long time family friend who referred us to call her cousin and friend Allison Polumbaro (nurse practitioner) who worked at the Cleveland Clinic in the Pediatric Epilepsy Unit. She has been our Angel! That is when our journey to answers began. It’s been a long journey but the Cleveland Clinic worked hard to help get Gwen’s seizures controlled. Their pediatric epilepsy unit is amazing and so are all of the doctors and nurses. We thank Dr. Gupta, an amazing pediatric epileptologist and head of the Cleveland Clinic Pediatric Epilepsy Department.
Gwen was recently diagnosed with KCNQ2. Thank you to Dr. S. Parihk who specializes in Neurometabolism and Neurogentics. I feel that I have more information now seeing that I searched for an answer since she was born. We are so happy that we can connect with other families now. Thank you to Jack’s Army!
Gwen is now 4 years old and she fights daily! She is currently taking Depakote to control seizures. Every day is therapy for her and a day full of learning and catching up! She loves ducks, music, and Yo Gabba Gabba! I try to keep her active and moving. We are working to get her into ABA therapy and a special school.