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Confused

Wed, 09/06/2017 - 11:42
Our 16 yr old son had his first possible seizure 5 months ago. We found him face down on the floor mubbling and disoriented and he had trouble breathing in his bedroom at 7am. He said only thing he remembered was the left side of face was numb and a loud noise in his ear and he passed out. He was sent to the hosptial they did ct scan and cleared him. 2 months later we actually witnessed what looked like a grand mal seizure " shaking in bed, foaming at mouth, eyes open and roll back in head, muscles tighten and than he tries to crawl off bed to floor and turn muscles turn to jello. It was around same time in the morning. We have been to a neurologist and cardiologist and have had a 24 hour test on the heart and brain/MRI/Eeg/Ekg/every blood test possible and everything is normal. We just did a 3 day nerologist video sleep study in the hospital and everything looked normal. After the 3 day hospitalized study the nerologist thinks it could be Neurocardiogenic syncope. We met with the other neurologist in the group practice and he says Epilepsy. We have him on low dose of keppra and while he sleeps he awakes sometimes and sits up and has a hard time breathing for few seconds. Everything happens before he goes to bed or on awakening. Any feedback would be great. Thank you.

Comments

Well all of the tests coming

Submitted by just_joe on Thu, 2017-09-07 - 11:41
Well all of the tests coming back normal can be what is picked up. Syncope can look like a seizure.Keep track of the times he has seizures and do research nocturnal epilepsy. A person that has nocturnal epilepsy generally has their seizures at night or right before going to bed and after waking up. The events you spoke about of him sitting up and having a hard time breathing could be a seizure event. Seizures for some people can be seconds long. I know been there done that. Mine are a few seconds long and the people around me do not know I have them.As for keppra.. It is the go to medication for seizure control. It works with all kinds of seizures. Keep track of the seizures he has while taking it It takes about 3 weeks for his body to get used to any seizure medication. That is the time period it takes to build up in his body so he has the therapeutic levels the neurologist wants. The therapeutic levels are there to stop a breakthrough seizure in case he takes a dosage late or forgets one. Give the keppra time to build and start working at the therapeutic level. After 2-3 months check with his neurologist and ask if if the dosage is set where it should be to stop his seizures if he is still having them/

I have learned that Epilepsy

Submitted by mandaw84 on Thu, 2017-09-07 - 21:54
I have learned that Epilepsy is unpredictable. I have read a lot on epilepsy and Unfortunately, they cant really pin point anything because there is still so much to learn. Also everything that I have read on epilepsy and if you have more then one seizure in your life you have epilepsy but there are several different kinds of epilepsy. This is what I have read on several epilepsy websites and my neuro. I have epilepsy but I have a generalized epilepsy and there are so many more. I used to be on Keppra but I had to switch to a different medication because I didn't work for me. 

I have learned that Epilepsy

Submitted by mandaw84 on Thu, 2017-09-07 - 21:54
I have learned that Epilepsy is unpredictable. I have read a lot on epilepsy and Unfortunately, they cant really pin point anything because there is still so much to learn. Also everything that I have read on epilepsy and if you have more then one seizure in your life you have epilepsy but there are several different kinds of epilepsy. This is what I have read on several epilepsy websites and my neuro. I have epilepsy but I have a generalized epilepsy and there are so many more. I used to be on Keppra but I had to switch to a different medication because I didn't work for me.

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