649 day(s) to end
Conner’s Story…(written by Conner’s Mom)
April 9, 2017 Conner suffered his first ever Grand mal seizure. He was a thriving, perfectly healthy boy up until that point. That was the start of many more seizures to come. He has been diagnosed with Intractable Epilepsy with Status Epilepticus. He is resistant to medications, though his Neuro has him on three. They feel that he has Doose Sydrome, a rare epilepsy. He suffers from many different seizure types…absence seizures, tonic clonic seizures, myoclonic seizures, drop seizures, and partial complex seizures. He has been put on the ketogenic diet and it has drastically helped with his myoclonic seizures.
We use a rescue med every morning to stop the seizures. He had a tube placed so he can take all his meds and we feed him overnight with a formula to give him nutrients. I had to take a Leave of Absence from my job to care for CJ. Conner has a 13 year old brother. CJ’s seizures affect his speech and walking. He will be starting therapy soon hoping that will help.