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Complex Febrile Seizures Evolved To Nocturnal Seizures?
Sun, 08/28/2016 - 23:37Topic: Parents & Caregivers
Hello, I am new to this site and am trying to grasp as much knowledge as I can about my daughter's new prognosis with Frontal Lobe Epilepsy. Our daughter began having febrile seizures just after her first flu shot at 6 months old. The seizure was complex and lasted for aprox. 45 min. Her seizures have always come on with a fever before, sometimes there were multiple with an illness. But most recently she had a seizure not associated with a fever while on a play date at a friends house (90+ degree temp, playing on the trampoline, possible dehydration). We have always been told she'd grow out of them by 5 or 6, but she is now 7. Because the last seizure happened without an apparent illness or fever, we called the neurologist and had a 1/2 hr sleep deprived EEG performed. The results threw my husband I for a loop, nocturnal seizures and FLE. Currently we are trying to get a second opinion, and find a neurologist who is better at his patient/parent explanation skills. We left the appt. with a prescription for an anticonvulsant but no sense of understanding. I've been told that the best way to identify nocturnal seizures is with a video polysomnographic or an EEG sleep study that runs at least one night, but possibly several days. Any suggestions? Also, the problem is we have co-slept with her, her entire life, and yes, she has jerks and ticks in her sleep but I've never once seen or heard her seize up in sleep. So another reason I feel it might be best to do the video EEG or polysomnograhic is to better understand when the seizures are occurring and what they look like. Anyway, I'm feeling lost and just wondered if there was anyone out there in the place as us.
so your daughter has had
Submitted by just_joe on Mon, 2016-08-29 - 15:28
so your daughter has had seizures mainly when she getss sick ot a fevor or is sick.Medication levels can be affected when a person is sick. But that does not mean those are the only times the person will have a seizure is when they are sick. After the diagnosis you should have talked to the neurologist and asked questions. Are there seizures the only ones she will have? Is this the best medication for her seizures? Are there other types of seizures she can have? Always being told she wll grow out of it does not mean she will.At 7 you should have asked if the neurologists still believed she would grow out of it. If not then what other kinds of seizures could she have? is th question you could have asked. Now you have seen here in a nocturnal seizure. and are questioning again. Co=sleeping with her her entire life hasn't helped you or her. Those jerks ir ticks were probably seizures,Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time. Anybody can have one but it isn't associated with epilepsy. Ever get the hickups??? Those are myoclonus which are rapid or suden jerks. There ia an epilepsy for just that JME.The EEG results are there and the seizures have proved that. A second opennion is not needed.The EEG is a test showing th electrical output coming from her brain.In the EEG the neurologist saw abnormalities in the Frontal Lobe of her brain. There fore TLE. Those abnormalities are spikes or waves aka seizure activity. The video EEG may show you more but the polysomnographic will not show epilepsy since it is for sleeping and used for sleeping disorders and not epilepsy. I know those are primatilary used for sleep apnia.. Before you set up the video EEG do yourself a favor. Ask the neurologists questions. Will we see what the seizure looks like? We are wanting to see what her nocturnal seizures look like. Are nocturnal seizures only at night? Because you have this site that you can scan thru and get all kind of answers to your questions about the different epilsys, seizures triggersSo from what I have read in your 2 posts you have known she has had epilepsy rom the time she was 6 months old and she is 7 years old now. Did you ever ask the neurologists questions? Did you research epilepsy or sites like this to find out about her epilepsy? I was diagnosed at 14.Back then the neurologists never talked to the teens. So what I did was research. there were no computers nack in 1964, If I could research to find out what I had. You should be able to when it comes to your daughter. This site is the place to start.I hope this helpsJoe