Video Monitor

[tinasmom]

We just purchased a baby video monitor from Wal-Mart for Nicole. It works wonderful and now we can see if she is having any seizures at night. So far, we have not seen any. It sure makes me feel better that I can now watch her at night. I know that since my daughter died in her sleep from a seizure, I am very paranoid about Nicole's seizures.

[RobinN]

That must be an incredible burden on your shoulders. I can only imagine.
I use to run to every noise, and now I have released that urge.

[wendyleigh25]

Tinasmom,
Hopefully you won't mind me asking this question but if I understand correctly Nicole one of your daughters died during a seizure and now you have another with epilepsy? I am so sorry and I also cannot imagine. Out of all the seizures I have had my mom still has not witnessed one. I am 25 and live with my husband and he has been with me EVERY seizure. Maybe God knows what he's doing when he spares my mom from seeing them. I know eventually she will but maybe she can get used to my diagnosis then witness one. I was diagnosed August 8, 2007. I am so sorry to hear about nicole. Do they know why she died from the seizure? I know this can sometimes happen with no answers I just thought you might have some. It does help future epilepsy pts but if you dont feel comfortable telling me its okay. My heart does go out to you. God bless you.
Wendy
PS- My ten month old does not have seizures yet thank god but we do have a video monitor I dont care what anyone says it eases my anxiety much more than the only noise ones because I can see what he is doing.We love ours!

[tinasmom]

Wendy -
My daughter, Tina, Nicole's mother died from a seizure. We adopted Nicole after Tina's death. Tina was diagnosed with Epilepsy at the age of 6 and died at 24. Nicole was diagnosed at the age of 6. Epilepsy runs in Tina's dads' family so this is hereditary. Although my youngest daughter who is 19 has never had any seizures. Tina actually aspirated during a seizure in her sleep. An autopsy was performed and there were no other causes besides the seizure. I actually had Sudden Unexplained Death in Epilepsy put on her death certificate. Tina's seizures where not controlled since she was a teenager. We only have one neurologist here and he is not very good. Because of her insurance, she could not see anyone else. She never worked or drove and I was not as educated on this as I am now. I obtained her medical records and her neurologist seemed to think that she really was not having seizures. Once she had a seizure that lasted 5 minutes and when she told the neurologist, he said that can't be true because she would be dead. Maybe if he would've listened to her and tried to help her, she would still be here. I also believe that because of her insurance, there was the factor of generic drugs. Since I have learned more about generic drugs, I'm almost positive that is why her seizures were never controlled. This is the main part of my story and now I am heavily involved with our local Epilepsy Foundation and try to educated people.

[Bernard]

That doctor sounds like an incompetent nincompoop.



P.S. Congrats on your video monitor.

[tinasmom]

A young woman that I know goes to the same neurologist and one time she forgot to bring her log with her and he told her that he couldn't do anything that day because she didn't have her log. He also put this woman on an anti-epileptic drug that causes her to be depressed. When she told him that she didn't like feeling depressed, he put her on an anti-depressant. I know for a fact that he just likes to push the pills, that's all he ever did with my daughter. I also found out that he claims to be an expert on Epilepsy and seizures. After reading my daughters medical records, I tend to disagree with him. I actually think that I possibly know more about seizures than he does.