I'm not sure if you will be able to help me. I'm just trying to find some answers. My daughter Kennedy was diagnosed with epilepsy at a very early age. It was easily controlled, and she only had seizures occasionally. She went to a private school with her brother and sister, she was pretty active, and for the most part she was a normal kid. January 4th of this year started out as a normal day. Kennedy and I, along with my other daughter, Ruby, spent the day doing errands and shopping. That afternoon, we went to the car wash like I had done several times before. When I pulled my car out onto the street, Ruby told me that Kennedy was having a seizure. She had complained of a headache earlier in the day, but after she ate lunch it went away. I jumped out of my car and ran to the backseat. I carefully lifted her out of the car and put her on the ground. The seizure lasted about 40 seconds, but afterwards she was completely unresponsive. I watched her and tried to help anyway I could. When the paramedics arrived, they tried to save her, but she was gone. They announced the time of death as 3:53 p.m. She was 9-years-old. It was awful. For the past 10 months I have been trying to heal and help my family recover. It was catagorized as SUDEP which they said is rare in children. They did an autopsy because it's so rare, (which was completely against my beliefs) but they didn't really find out anything. They said her body just stopped for some reason. Do you think I could have done something differently to help save her? Did I do something wrong to trigger the seizure? I would appreciate any answers. I'm 32 and I've just been treated like I'm stupid ever since she passed away. Thank you for your time.
I am so sorry for your terrible loss.
Firstly I want to say that there was nothing that you could have done to save her. It all happened so fast.
There is nothing that you did to trigger that seizure.
As you know, there is relatively little known about SUDEP but they do know that it is rare in children, so not even a medical professional would have expected it.
Sometimes there just are not any answers.
You need grief counseling at this time. When we lose a loved one most of us feel that we should have done something that we didn't. It is a most common and human response. Grief therapy by a competent clinical psychologist can help.
If you haven't done so already, you should get in touch with the SUDEP organization. Perhaps there is an ongoing study that could use your information to help others.
Please know that I do understand how you must feel.