Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Dear Kathy, has mainly myoclonic astatic drop attacks (or did,...touch wood), where he is 'thrown' forward, so his head and face usually got the full impact. His last 15 months have left him with many scars, mainly on his chin and cheeks, and 2 'dead' front teeth, which we hope will come out soon (he is nearly 5). He got black eyes as well, but mainly from falling forward, the force of impact on his nose spreading to his eyes. It sounds like lin has 'atonic' drop attacks, where he loses tone, and crumples, landing on his bottom. We've had our fair share of those too, not 'quite' as nasty as the myoclonic ones, but dreadful all the same. The force with which lin's head is flung forward though, sounds like there might be a myoclonic component as well. We haven't seen the injuries to the head you mention unless there is actual impact. Isn't this the most despicable subject to have to discuss? Our experience with has left us extremely blase about the 'normal' injuries his brother and sister get, not really fair on them, but I guess that's all part of it. Not sure of lin's history, how long has he been on the diet, is he still on meds? 's drops were the first to go, thank God, but we've been caught unprepared a few times during drug reductions and once when he dropped out of ketosis unexpectedly. His helmet sits in the dress up cupboard at the moment, and that's where I hope it stays!! Hill Drop Seizures I was wondering if anyone's child has drop seizures that results in eye injuries? lin has had several drops lately where he falls directly on his rear and his head either snaps forward or backwards. If his head goes backwards, he may hit the back of it on the floor. If his head goes forward, it usually slams forward but does not hit into anything. On any of these seizures though, he does not physically hit his face on anything but somehow the impact of the drops causes him to get black eyes. Sometimes, he gets cuts over his eyes or at the corner of his eyes and they start bleeding. He has also gotten bruised and bloody cheeks. Any ideas of what might be going on? I told our neuro's nurse about this and she thought that was pretty interesting but didn't have any answers. I told the neuro about it and he didn't have any answers and just stared at his records like he usually does when he doesn't have an answer or thinks something is insignificant. kathy (lin's Mom) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Hi , lin's not on any medication now since we weaned topamax last week. His seizures were greatly reduced on our modified Atkins diet and he was having such side effects on the med that we wanted to get off as soon as possible. He's still having just 1-6 drops a day but they seem to be harder drops than he was having. He really seems to be slammed to the ground like you described. He does look like child welfare needs to come and pick him up! lin has a regular bike helmet which he wears a lot but it doesn't protect his face. We got a big helmet with a face plate that the clinic fitted for him but it is just too big and uncomfortable that he just won't wear it at all. take care, Kathy Drop Seizures I was wondering if anyone's child has drop seizures that results in eye injuries? lin has had several drops lately where he falls directly on his rear and his head either snaps forward or backwards. If his head goes backwards, he may hit the back of it on the floor. If his head goes forward, it usually slams forward but does not hit into anything. On any of these seizures though, he does not physically hit his face on anything but somehow the impact of the drops causes him to get black eyes. Sometimes, he gets cuts over his eyes or at the corner of his eyes and they start bleeding. He has also gotten bruised and bloody cheeks. Any ideas of what might be going on? I told our neuro's nurse about this and she thought that was pretty interesting but didn't have any answers. I told the neuro about it and he didn't have any answers and just stared at his records like he usually does when he doesn't have an answer or thinks something is insignificant. kathy (lin's Mom) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Hi, Our daughter 's drop seizure story sounds like all the others I've read so far. She started with one, at the age of 4.5, and soon progressed to 50 or more a day. She had a helmet, but would fall and hit her face. And she always seemed to be standing by the corner of some piece of furniture when it happened. We soon had that gray pipe insulation taped to the corners of everything! My husband split it down the middle, and taped it everywhere! Our house was interesting, to say the least! But I wanted to comment on the black eyes. I found out, that all would have to do is hit the bridge of her nose, and it would cause her to get the black eyes. She also would get cuts around her eyes, bloody her lip, and gums, etc. It was a nightmare for us. The diet miraculously took these drops away, and even to this day, years after the diet, we still only see an occassional drop that can be traced to something she's eaten or an illness. Take care, Kandy 11 (former keto kid, now on modified keto and lamictal) Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Hi Kathy, lin's seizures sound like Hannah's. She has atonic seizures. She loses muscle tone in neck, arms and trunk. She could be sitting and playing and suddenly have a slight head nod and then fall over hitting her head pretty good. Thank God, I caught one on video one day and showed our pediat. he immediately ordered a helmet with face guard for her. Like lin she d wearing it. We were fortunate in the fact that her seizures came in clusters so once we saw them coming we just restricted her activity and she chose to stay on a matress on the floor to play instead of wearing the helmet. This all began three yrs. ago she has been on the diet 11 mths now and only had one two week seizure cluster (which we think a bowel impaction brought on). She also takes 900 mg. of Trileptal which we hope to someday wean her from. Her diagnosis from Cleveland Clinic is Benign Focal Epilepsy of Childhood with Atypical seizures. The diet has given her her life back and she started Kindger. in the fall! She is 6 yrs. old. How old is lin? She had never blackened an eye in any of her falls but did get cuts and bruises. They came so quick we rarely could catch her in time to stop the falling. Take care Gail--- In ketogenic@y..., " Kathy Greenwood " <malinois@m...> wrote: > I was wondering if anyone's child has drop seizures that results in eye injuries? lin has had several drops lately where he falls directly on his rear and his head either snaps forward or backwards. If his head goes backwards, he may hit the back of it on the floor. If his head goes forward, it usually slams forward but does not hit into anything. On any of these seizures though, he does not physically hit his face on anything but somehow the impact of the drops causes him to get black eyes. Sometimes, he gets cuts over his eyes or at the corner of his eyes and they start bleeding. He has also gotten bruised and bloody cheeks. Any ideas of what might be going on? I told our neuro's nurse about this and she thought that was pretty interesting but didn't have any answers. I told the neuro about it and he didn't have any answers and just stared at his records like he usually does when he doesn't have an answer or thinks something is insignificant. > > kathy (lin's Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Hello, My daughter Sydney had drop seizures. She had her first one at age 3 and they slowly progressed to almost fifty a day. She also wore helment. She had no signs of any problems before the first drop. She has been diagnosed with lennox gastuat but I fill it is a guess. She has no developmental delays and we have been doing this now for two years. She started the diet two months ago and everything went away. She is our old Sydney again . Many times she hit her face ,busted eyes and even bit through her tongue. I had to quite work to be right with her every step. We prayed hard for a break,and I guess God knew we needed one. Sydney was on Topamax also. We are now in the weaning process. I just hope and pray that it all goes well. I used a car booster for Sydney to watch movies and eat in. That way if she dropped She couldnt fall foward. It was a big help to us. I hope this helps. ( Sydney's mom keto kid 10-8-01 four years old, seizure free and almost med free) Re: Drop Seizures > Hi Kathy, > > lin's seizures sound like Hannah's. She has atonic seizures. She > loses muscle tone in neck, arms and trunk. She could be sitting and > playing and suddenly have a slight head nod and then fall over > hitting her head pretty good. Thank God, I caught one on video one > day and showed our pediat. he immediately ordered a helmet with face > guard for her. Like lin she d wearing it. We were fortunate > in the fact that her seizures came in clusters so once we saw them > coming we just restricted her activity and she chose to stay on a > matress on the floor to play instead of wearing the helmet. This all > began three yrs. ago she has been on the diet 11 mths now and only > had one two week seizure cluster (which we think a bowel impaction > brought on). She also takes 900 mg. of Trileptal which we hope to > someday wean her from. Her diagnosis from Cleveland Clinic is Benign > Focal Epilepsy of Childhood with Atypical seizures. The diet has > given her her life back and she started Kindger. in the fall! She is > 6 yrs. old. How old is lin? She had never blackened an eye in > any of her falls but did get cuts and bruises. They came so quick we > rarely could catch her in time to stop the falling. Take care Gail--- > In ketogenic@y..., " Kathy Greenwood " <malinois@m...> wrote: > > I was wondering if anyone's child has drop seizures that results in > eye injuries? lin has had several drops lately where he falls > directly on his rear and his head either snaps forward or backwards. > If his head goes backwards, he may hit the back of it on the floor. > If his head goes forward, it usually slams forward but does not hit > into anything. On any of these seizures though, he does not > physically hit his face on anything but somehow the impact of the > drops causes him to get black eyes. Sometimes, he gets cuts over his > eyes or at the corner of his eyes and they start bleeding. He has > also gotten bruised and bloody cheeks. Any ideas of what might be > going on? I told our neuro's nurse about this and she thought that > was pretty interesting but didn't have any answers. I told the neuro > about it and he didn't have any answers and just stared at his > records like he usually does when he doesn't have an answer or thinks > something is insignificant. > > > > kathy (lin's Mom) > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 , Hannah was just like Sydney. Perfectly healthy until 3.5 yrs old and then she started falling out of the blue! It was scary and such a nightmare for two yrs. before we started the diet. I did so much research on the internet and also was concerned that Hannah had Lennox Gastaut. Cleveland reassured us that because there was no regression in her mental or physical capabilities that it wasn't LG. The seizures did effect her fine and large motor skills but she is catching up. By the way, she just learned to tie her own shoes!!! What a thrill for her. She is becoming quite independent and even getting completely dressed on her own. Such simple things to others have brought such joy to us : )We thank God everyday for bringing us through. Gail > > > I was wondering if anyone's child has drop seizures that results in > > eye injuries? lin has had several drops lately where he falls > > directly on his rear and his head either snaps forward or backwards. > > If his head goes backwards, he may hit the back of it on the floor. > > If his head goes forward, it usually slams forward but does not hit > > into anything. On any of these seizures though, he does not > > physically hit his face on anything but somehow the impact of the > > drops causes him to get black eyes. Sometimes, he gets cuts over his > > eyes or at the corner of his eyes and they start bleeding. He has > > also gotten bruised and bloody cheeks. Any ideas of what might be > > going on? I told our neuro's nurse about this and she thought that > > was pretty interesting but didn't have any answers. I told the neuro > > about it and he didn't have any answers and just stared at his > > records like he usually does when he doesn't have an answer or thinks > > something is insignificant. > > > > > > kathy (lin's Mom) > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > > > List is for parent to parent support only. > > It is important to get medical advice from a professional > keto team! > > Subscribe: ketogenic-subscribe@y... > > Unsubscribe: ketogenic-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Same here too. Major loss of coordination and learning. Took about 6 months to get back!! AAARRHGGGGGG--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Thanks for all the stories everyone! Its good to know that we are not alone! I want to get lin onto the full ketogenic diet as soon as possible because we have decided that our Atkins diet is just not enough. Its so sad to look at that poor little beat up face. i think the topamax was really helping with his seizures but the side effects were so so horrible that we just couldn't stay on it. Thats what is so frustrating! They have these drugs that in many cases really do help with the seizures but the side effects are just not tolerable! take care, Kathy Re: Re: Drop Seizures Hi, Our daughter 's drop seizure story sounds like all the others I've read so far. She started with one, at the age of 4.5, and soon progressed to 50 or more a day. She had a helmet, but would fall and hit her face. And she always seemed to be standing by the corner of some piece of furniture when it happened. We soon had that gray pipe insulation taped to the corners of everything! My husband split it down the middle, and taped it everywhere! Our house was interesting, to say the least! But I wanted to comment on the black eyes. I found out, that all would have to do is hit the bridge of her nose, and it would cause her to get the black eyes. She also would get cuts around her eyes, bloody her lip, and gums, etc. It was a nightmare for us. The diet miraculously took these drops away, and even to this day, years after the diet, we still only see an occassional drop that can be traced to something she's eaten or an illness. Take care, Kandy 11 (former keto kid, now on modified keto and lamictal) Idaho "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Yup -- that was my exact experience with Topomax. It's probably the only one that did give us control -- but it was at the expense of having a complete zombie, unable to interact or learn. ARGHHH!!!--D *** --- Kathy Greenwood wrote: i think the topamax was really > helping with his seizures but the side effects were > so so horrible that we just couldn't stay on it. > Thats what is so frustrating! They have these drugs > that in many cases really do help with the seizures > but the side effects are just not tolerable! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 was on Lamictal -- we weaned it while on the diet. Not my favorite time period! All kids are different -- but it did nothing for her seizures, caused sleep disturbances, made her aggressive and hyper and while we were weaning we saw lots of behavioral quirks and withdrawl seizures. VERY GLAD it's behind us!--D --- tkb1212@... wrote: Have any of your children been on Lamictol. Tyler has been seizure free every since we changed from topamax > to Lamictol. We are still on the diet. > Thereasa and Tyler (ketokid since 05/28/01) MI > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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