Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 I don't have any videos of my son's seizures. He has thankfully been seizure free for quite a while but I do remember seeing some online at youtube at one time. My son also has some weird behaviors that I think are just part of his ds and the dr. says it's really hard to tell the difference sometimes but being we know he does have epilepsy he is being treated. The only thing I can tell you is to have him checked and ask for an eeg. Our dr. says when does things I think might be seizure related try to distract him. If I can get him to stop and do something else it most likely is just behavior and not seizures. Most of his grand mal seizures were during sleep and they are very dangerous. I don't allow to have a pillow still but he bunches up his blanket and puts it beneath his head which worries me too. Needless to say I am a light sleeper even after 7 years. I know they don't call them grand mals anymore, the are called tonic clonics but to me that sounds like an exotic drink. Terry To: Terry To: Terry Do you know of a video of the type of seizures your son has I always wondered of the different types of seizures thinking my son maybe having some but never sure of it. I am very scared now not to scare anyone but just had my friend pass away this Mon. morning he had been having seizures for years but don't know yet if this was the reason for his passing he was gone in his sleep. My son shakes his head and his eyes go up and his hands like if he was praying, maybe this is just a DS thing but never have I seen another child do this or does anyone else knows about this it just sounded like what Terry had mentioned his son has. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 The clonus (or tonic clonic) is the actual jerking. I have myoclonus and sleep myoclonus, but they do not call them seizures. In sleep, it is when you feel like you are falling and then your body JUMPS out of it's skin. When awake, it feels like someone stuck you with a pin and then your affected limb or part uncontrollably jumps. I have had these since I was little. The seizure is the electrical misfiring in the brain. Iwish they would have given me a 24 hour eeg. They did not see my sleep myoclonus fromo me closing my eyes for 10 minutes. They did not even see my mycolonic jerks in my fingers during the test. Do you have to be admitted to do the 24 hour eeg or do they send the device home on you? > > I don't have any videos of my son's seizures. He has thankfully been seizure free for quite a while but I do remember seeing some online at youtube at one time. My son also has some weird behaviors that I think are just part of his ds and the dr. says it's really hard to tell the difference sometimes but being we know he does have epilepsy he is being treated. The only thing I can tell you is to have him checked and ask for an eeg. Our dr. says when does things I think might be seizure related try to distract him. If I can get him to stop and do something else it most likely is just behavior and not seizures. Most of his grand mal seizures were during sleep and they are very dangerous. I don't allow to have a pillow still but he bunches up his blanket and puts it beneath his head which worries me too. Needless to say I am a light sleeper even after 7 years. > I know they don't call them grand mals anymore, the are called tonic clonics but to me that sounds like an exotic drink. > > > > > > Terry > > > > > > To: Terry > > > > > > To: Terry > Do you know of a video of the type of seizures your son has I always wondered of the different types of seizures thinking my son maybe having some but never sure of it. I am very scared now not to scare anyone but just had my friend pass away this Mon. morning he had been having seizures for years but don't know yet if this was the reason for his passing he was gone in his sleep. My son shakes his head and his eyes go up and his hands like if he was praying, maybe this is just a DS thing but never have I seen another child do this or does anyone else knows about this it just sounded like what Terry had mentioned his son has. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 , was admitted both times but I know several people who took the device home and then just had to bring it back for reading. He tolerated it much better than I had even dared to hope and they kept it on for 3 days both times. I was shocked. 's myoclonic jerks were during the day and his arm would fly straight up in the air. Horrible if he was holding a drink. Sometimes it would just be the hand slightly jerking up and down several times. He has had just about every seizure type there is after he had the first grand mal. But the absolute scariest were the drops and the grand mals. I really think some of them were brought on by all the medicines we tried before finding the right combination for him. Terry To: Terry > > > > > > To: Terry > Do you know of a video of the type of seizures your son has I always wondered of the different types of seizures thinking my son maybe having some but never sure of it. I am very scared now not to scare anyone but just had my friend pass away this Mon. morning he had been having seizures for years but don't know yet if this was the reason for his passing he was gone in his sleep. My son shakes his head and his eyes go up and his hands like if he was praying, maybe this is just a DS thing but never have I seen another child do this or does anyone else knows about this it just sounded like what Terry had mentioned his son has. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Thanks for the info > > > > I don't have any videos of my son's seizures. He has thankfully been seizure free for quite a while but I do remember seeing some online at youtube at one time. My son also has some weird behaviors that I think are just part of his ds and the dr. says it's really hard to tell the difference sometimes but being we know he does have epilepsy he is being treated. The only thing I can tell you is to have him checked and ask for an eeg. Our dr. says when does things I think might be seizure related try to distract him. If I can get him to stop and do something else it most likely is just behavior and not seizures. Most of his grand mal seizures were during sleep and they are very dangerous. I don't allow to have a pillow still but he bunches up his blanket and puts it beneath his head which worries me too. Needless to say I am a light sleeper even after 7 years. > > I know they don't call them grand mals anymore, the are called tonic clonics but to me that sounds like an exotic drink. > > > > > > > > > > > > Terry > > > > > > > > > > > > To: Terry > > > > > > > > > > > > To: Terry > > Do you know of a video of the type of seizures your son has I always wondered of the different types of seizures thinking my son maybe having some but never sure of it. I am very scared now not to scare anyone but just had my friend pass away this Mon. morning he had been having seizures for years but don't know yet if this was the reason for his passing he was gone in his sleep. My son shakes his head and his eyes go up and his hands like if he was praying, maybe this is just a DS thing but never have I seen another child do this or does anyone else knows about this it just sounded like what Terry had mentioned his son has. > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Ditto, Thanks for the info. > > > > > > I don't have any videos of my son's seizures. He has thankfully been seizure free for quite a while but I do remember seeing some online at youtube at one time. My son also has some weird behaviors that I think are just part of his ds and the dr. says it's really hard to tell the difference sometimes but being we know he does have epilepsy he is being treated. The only thing I can tell you is to have him checked and ask for an eeg. Our dr. says when does things I think might be seizure related try to distract him. If I can get him to stop and do something else it most likely is just behavior and not seizures. Most of his grand mal seizures were during sleep and they are very dangerous. I don't allow to have a pillow still but he bunches up his blanket and puts it beneath his head which worries me too. Needless to say I am a light sleeper even after 7 years. > > > I know they don't call them grand mals anymore, the are called tonic clonics but to me that sounds like an exotic drink. > > > > > > > > > > > > > > > > > > Terry > > > > > > > > > > > > > > > > > > To: Terry > > > > > > > > > > > > > > > > > > To: Terry > > > Do you know of a video of the type of seizures your son has I always wondered of the different types of seizures thinking my son maybe having some but never sure of it. I am very scared now not to scare anyone but just had my friend pass away this Mon. morning he had been having seizures for years but don't know yet if this was the reason for his passing he was gone in his sleep. My son shakes his head and his eyes go up and his hands like if he was praying, maybe this is just a DS thing but never have I seen another child do this or does anyone else knows about this it just sounded like what Terry had mentioned his son has. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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