Claire’s journey through Epilepsy began around the age of 6 years old. She started with “drop attacks” and at the time we thought she was just playing games with her brother in her highchair while she was eating and drinking. As the drop attacks continued we had a feeling that it was no longer a game anymore. We immediately took her to see a seizure doctor and it was then that the medicine game started: Keppra, Lamictal, Onfi, Banzel, Ativan, Epidolex, Trilastin, and the Ketogenetic diet just to name a few. Over a period of time Claire’s seizures had gotten progressively worse. After many EEG’s, MRI’s and the countless EMS rides and ER visits we were referred to a neurologist at the Cleveland Clinic.
Her seizures went from drop attacks to focal, absentee, and then the myoclonic, tonic clonic seizures and during this time Claire was rapidly losing weight. After numerous EEG’s and MRI’s we were told that Claire has slow wave continues spikes and by this time we were up to our 18 medicine and running out of options it felt like.
Then, her doctors told us our worst fear, she has LGS (Lennox-Gastaut Syndrome) a rare and severe form of epilepsy. When the doctors told us of the diagnosis we asked a thousand times: “Are you sure?” How could our daughter get so severe so fast? But we learned in cases of LGS there isn’t an associated condition present and the cause of the disorder is unknown.
It was then suggested that Claire would no longer be able to walk or stand, and would be wheelchair bound forever. We had to order a helmet because the seizures were causing numerous bruises and injuries to all parts of her body. As a parent of a child with epilepsy, you try to do what’s best for them even though you second guess yourself all the time.
It was suggested next Claire undergo surgery to have the VNS (Vagus nerve stimulation) device implanted to help with the seizures. That quickly turned into our worst nightmare along with several medications that caused severe breathing issues and skin rashes. The VNS paralyzed my daughter left vocal cords causing her to choke and not be able to breath. This left her with vocal cord paralysis. The condition has continued to take more and more from our daughter, and by this point we didn’t know how much more our daughter’s little body could take or as parents how much more we could endure as a family!
The struggle was becoming all too real for our family. Then, yet another setback, she lost her ability to self-feed and became G tube dependent. Our lives are like a rollercoaster ride… every day is an adventure but through all trials and tribulations we will continue to fight epilepsy, together, as a family. We have become advocates in educating schools, families, aides and nurses and most of all the community. I frequently tell people that epilepsy speaks volumes too just like those with other conditions. You are not alone in the fight against this (sometimes) invisible illness.
We are extremely thankful for Claire’s aides and nurses who’ve helped us with our battles, struggles and tears. Through it all, Claire, remains to have a beautiful smile and her strength to keeping going—she is truly amazing and for that she is not only our hero but a true epilepsy warrior!
Bless you over and over. We are all searching for better treatments. I am glad to put your faces with your names. Thank you for sharing your story.