Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 In a message dated 3/3/01 5:16:19 PM Pacific Standard Time, epickwick@... writes: > Are seizures common with ASD?? Unfortunately, yes they are. I've read that even kids who do not have seizures when they are young, may start in adolescence. Last week Dr. Rimland spoke to our local Autism Society meeting and mentioned the possibility that many autistic kids have undiagnosed seizures that are deep in the brain and not seen on standard EEG's. He suggested that the positive effects of Vitamin B6 and DMG may be related their effect in reducing these sub-clinical seizures. Have you tried DMG yet? Another interesting thing he said about DMG is to try using quite a bit (5-20 tablets) at a time to find an optimal amount. Supposedly the only way you can be hurt by DMG is if you get hit ion the head by a falling jar of it (Rimland's joke) Good luck. Cherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Hi , My eight year old ASD daughter has a seizure disorder, and I think there are several others on this list who do too. So far I have not been completely sucessful in getting it under control, nor have the neurologists agreed on exactly what is going on. but I just wanted to comment that what you described with your son sounded very much like what happened to my daughter twice when she had febrile seizures. She was 18 months old and she had a fever. She was nursing when it happened the first time; I remember that she stopped and looked at me really strangely, put her hands up and felt my face as if she couldn't see me, then her eyes started roll up and she began turning blue around the mouth, then her skin turned gray. It was horrifying, I called 911 and they took us to the hospital, and told me it was a febrile seizure. The CAT scan was normal. I've always wondered about that, it seemed she was out for a long time. I hope you get some answers for your son. Good luck Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Hi, This is a subject I just have to comment on. It could be a seizure; maybe you should have it checked, and be persistent. I still feel so angry when I think of the times I told the pediatrician (of course, with our HMO we had a different ped.every visit) about 's strange jerking and twitching and the way her eyes would fix up and off to the right - now that I look back ,of course she was having seizures; this was when she was less than a year old. And not one ped. said maybe she should see a neurologist. Not one. They just didn't have a clue. They totally brushed me off as a hypersensitive first time mom. It wasn't until three years later that she was diagnosed as having a seizure disorder - thanks to our great OT, who insisted I go to a specialist, and went along with me. So, insist on seeing a neurologist . I wish I had - if it turns out to be nothing, at least you will have investigated . Good luck. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Kathy, I am definitely going to get an appointment with a neurologist. In the meantime, I want to act under the assumption that he is having seizures. What do I do? I've cut out television altogether, is that necessary? Thank you. Michele in land > (of course, with our HMO we had a different ped.every visit) > about 's strange jerking and twitching and the way her eyes > would fix up and off to the right - now that I look back ,of course > she was having seizures; this was when she was less than a > year old. And not one ped. said maybe she should see a > neurologist. Not one. They just didn't have a clue. They totally > brushed me off as a hypersensitive first time mom. It wasn't until > three years later that she was diagnosed as having a seizure > disorder - thanks to our great OT, who insisted I go to a > specialist, and went along with me. So, insist on seeing a > neurologist . I wish I had - if it turns out to be nothing, at least you > will have investigated . Good luck. > > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Dear ladies, I can't remember which ones..Laurie in AZ.......??? If you suspect seizures---see a specialist and insist on it. Our daughter's was so severe that of course we saw one right away and fortunately our family doctor had a connection at a local children's hospital so we got in right away. We have been very blessed that depakote keeps them under control. About doctors...after our special child, we now see a family doctor. I, too, found that the peds tended to brush things off. Obviously the majority of things mothers complain about turn out to be nothing, but their senses aren't too keen with special kids. Even after the seizures were diagnosed, I wrote the peds a letter and they never even responded. I'm not the suing type..maybe that's why I didn't get a response. I do also want to mention that I have a friend whose child seemed to droop and go limp after nursing. He was on an apnea monitor for a year... They don't know if it was a kind of reflux....anyway...they child is 9 or so and just fine. But you never know..so get it checked out. April in SE PA--Simona's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 [ " Shirley " s.holland2@...> writes: I hope this is an ok topic ? I have seizure like episodes and the EEG showed very low voltage brain activity so it's not epilepsy. Has anyone else had this sort of result (low voltage) from an EEG ? Shirley] Dear Shirley, I also have seizure like episodes and the EEG's are always reported as " Normal " . I take 300mg Neurontin 5 times a day for a total of 1500mg and still have these episodes especially when I am over tired or stressed. Doctors have said it's not associated with Chiari. I'm sorry to differ with them. I know quite a few Chiarians on this list who experience the same problem with seizures and no explanation! It seems to be one of those phantom problems associated with the brain that remains a mystery. Hummm! Charlotte in MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 [ " Shirley " s.holland2@...> writes: I hope this is an ok topic ? I have seizure like episodes and the EEG showed very low voltage brain activity so it's not epilepsy. Has anyone else had this sort of result (low voltage) from an EEG ? Shirley] Dear Shirley, I also have seizure like episodes and the EEG's are always reported as " Normal " . I take 300mg Neurontin 5 times a day for a total of 1500mg and still have these episodes especially when I am over tired or stressed. Doctors have said it's not associated with Chiari. I'm sorry to differ with them. I know quite a few Chiarians on this list who experience the same problem with seizures and no explanation! It seems to be one of those phantom problems associated with the brain that remains a mystery. Hummm! Charlotte in MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 [ " Shirley " s.holland2@...> writes: I hope this is an ok topic ? I have seizure like episodes and the EEG showed very low voltage brain activity so it's not epilepsy. Has anyone else had this sort of result (low voltage) from an EEG ? Shirley] Dear Shirley, I also have seizure like episodes and the EEG's are always reported as " Normal " . I take 300mg Neurontin 5 times a day for a total of 1500mg and still have these episodes especially when I am over tired or stressed. Doctors have said it's not associated with Chiari. I'm sorry to differ with them. I know quite a few Chiarians on this list who experience the same problem with seizures and no explanation! It seems to be one of those phantom problems associated with the brain that remains a mystery. Hummm! Charlotte in MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 I too have seizures with no known explanation. I take Tegretol (carbamazapine) which seem to control them pretty well. Like Charlotte, I have been told they are not associated with Chiari...but I wonder! - Tammy _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 I too have seizures with no known explanation. I take Tegretol (carbamazapine) which seem to control them pretty well. Like Charlotte, I have been told they are not associated with Chiari...but I wonder! - Tammy _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 Hi guys...Just thought that I needed to add my experience to this. Prior to my decompression I had many seizures. ( 3 During one MRI ) Post decompression= no seizures. This is 12+ years later! My chiari is complicated by hydro....this is documented to cause seizures. This was quite probably caused by the chiari. (I feel that this may be underdiagnosed in many chiari folk.) In that case is it the chiari or the hydro causing the seizures??? Chicken or the egg? Sally R ACM..Decompression '91... Hydro..VP shunt..2 revisions Doing GREAT in Bethlehem,Pa with NO medications > I too have seizures with no known explanation. I take Tegretol > (carbamazapine) which seem to control them pretty well. Like Charlotte, I > have been told they are not associated with Chiari...but I wonder! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 Hi guys...Just thought that I needed to add my experience to this. Prior to my decompression I had many seizures. ( 3 During one MRI ) Post decompression= no seizures. This is 12+ years later! My chiari is complicated by hydro....this is documented to cause seizures. This was quite probably caused by the chiari. (I feel that this may be underdiagnosed in many chiari folk.) In that case is it the chiari or the hydro causing the seizures??? Chicken or the egg? Sally R ACM..Decompression '91... Hydro..VP shunt..2 revisions Doing GREAT in Bethlehem,Pa with NO medications > I too have seizures with no known explanation. I take Tegretol > (carbamazapine) which seem to control them pretty well. Like Charlotte, I > have been told they are not associated with Chiari...but I wonder! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 Hi guys...Just thought that I needed to add my experience to this. Prior to my decompression I had many seizures. ( 3 During one MRI ) Post decompression= no seizures. This is 12+ years later! My chiari is complicated by hydro....this is documented to cause seizures. This was quite probably caused by the chiari. (I feel that this may be underdiagnosed in many chiari folk.) In that case is it the chiari or the hydro causing the seizures??? Chicken or the egg? Sally R ACM..Decompression '91... Hydro..VP shunt..2 revisions Doing GREAT in Bethlehem,Pa with NO medications > I too have seizures with no known explanation. I take Tegretol > (carbamazapine) which seem to control them pretty well. Like Charlotte, I > have been told they are not associated with Chiari...but I wonder! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 I would be really interested in hearing people describe what their seizures feel like from mild to severe. Thanks to anyone who would be willing to explain their experiences. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.474 / Virus Database: 272 - Release Date: 4/18/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 I would be really interested in hearing people describe what their seizures feel like from mild to severe. Thanks to anyone who would be willing to explain their experiences. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.474 / Virus Database: 272 - Release Date: 4/18/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe. > Can we make this a public topic? I am interested also, and maybe others are, too. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe. > Can we make this a public topic? I am interested also, and maybe others are, too. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe. > Can we make this a public topic? I am interested also, and maybe others are, too. ~Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 RE: seizures I would be really interested in hearing people describe what their seizures feel like from mild to severe. Thanks to anyone who would be willing to explain their experiences. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.474 / Virus Database: 272 - Release Date: 4/18/2003 Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 RE: seizures I would be really interested in hearing people describe what their seizures feel like from mild to severe. Thanks to anyone who would be willing to explain their experiences. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.474 / Virus Database: 272 - Release Date: 4/18/2003 Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 RE: seizures I would be really interested in hearing people describe what their seizures feel like from mild to severe. Thanks to anyone who would be willing to explain their experiences. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.474 / Virus Database: 272 - Release Date: 4/18/2003 Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe I have no idea as I was unconscious... mine were from hydrocephalus, and once the VA shunt was installed, never had another... that was 23 years ago Luella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe I have no idea as I was unconscious... mine were from hydrocephalus, and once the VA shunt was installed, never had another... that was 23 years ago Luella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 > I would be really interested in hearing people describe what their seizures feel like from mild to severe I have no idea as I was unconscious... mine were from hydrocephalus, and once the VA shunt was installed, never had another... that was 23 years ago Luella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 I can tell when I am going to start to seizure. I feel like I am burning up and then they start. They don't last for more than a few minutes [ or so it seems to me ]. I was assured by the docs that the neurontin would keep them under control as well as help with the pain control. I take 2000mg of Neurontin and 8-mg of morphine per day. Don't know if the info helps anyone best wishes Ann in Brisbane Australia Sandy wrote: > > > I would be really interested in hearing people describe what their > seizures feel like from mild to severe. > > > Can we make this a public topic? I am interested also, and maybe > others are, too. > > ~Sandy > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
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