Conner suffered his first ever seizure on April 9, 2017. Up until that point, he was a perfectly healthy, thriving 3 and a half year old. Just two days prior, he attended his pre K orientation and was looking forward with excitement to start school in September. Unfortunately, Conner’s seizures are still uncontrolled, so he wasn’t able to start this year.
We frantically called 911 that morning and that was the first of many ambulance rides that followed. CJ was admitted, hooked up to an EEG and within minutes he had another seizure. He was released a week later with medication to take and we were told he has epilepsy.
Epilepsy? But we don’t even have epilepsy in our family? How does a perfectly healthy 3 and a half year old wake up one day with epilepsy? We still don’t understand.
CJ would be ok for a day or two then the seizures would return which meant back to the hospital. He was admitted 5 times that first month. Our little boy was becoming worse, resistant to medications, (we’ve tried so many we lost count)…and we were feeling helpless searching for answers. At one point, CJ was so sick that he was having hundreds of seizures a day.
His last admission into the hospital lasted 63 days. CJ had MRI’s, cat scans, xrays, a spinal tap and endless bloodwork done. He also went through two rounds of IV steroids which would have horrible side effects. He also had g tube surgery done because he couldn’t swallow all the medications and at one point, he wasn’t even eating. Through the surgery, they found that he has an inguinal hernia which will have to be dealt with at a later date. We’ve also started genetic testing to see if we can find a cause, but we haven’t been successful yet.
CJ suffers from many different types of seizures. The neurologist has diagnosed him with Doose Syndrome. It’s a rare type of epilepsy that is resistant to medications, meaning we can’t achieve full seizure control through medicine. He currently is on 3 different types of AED’s, plus 2 rescue meds which all cause horrible side effects. He loses his appetite, gets insomnia, bruises easily and is now starting to have behavioral problems. The seizures also affect CJ’s speech and walking. He has to wear a helmet at all times because we never know when one will strike. He will be starting therapy again soon, hoping it will help.
We also have tried cbd oil but unfortunately it didn’t help. CJ is also on the ketogenic diet. This diet has stopped two of his seizure types.
Our lives have changed dramatically since our peanut has become sick. I had to leave my job to care for him, which makes it extremely difficult to afford the basic necessities such as food and clothing, etc. CJ also has to have a nurse for overnight due to his seizures.
CJ also has a 14yr old brother, Jared, who loves and adores him very much.
Seeing your child sick and not being able to cure him is the absolute worst feeling in the world. The constant worry, the feelings of helplessness, they weigh on our minds and hearts every second of every day. I can say that the only positive that has come from all of this is that we all hug each other a little tighter, we don’t take life for granted and we never miss an opportunity to say I love you. My faith in God has strengthened and I pray for Conner’s healing every day.