Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 I had a recent post mentioning these also. Lily had them too! couldn't see them but don't try to sleep with her, because she was twitching all the time. Not every night (I don't think?) but on those bad nights it was almost constant. She would would wake usually every 1 1/2 hours - bad nights every 45 minutes. Never fiqured out what they were. She would cry out-pissed off about being awaken. Awaken by her own twitching. Mentioned it to the Doc repeatedly-she didn't know what it was. Is this common to the other Mito kids? Is it part of or causing the " sleep difficulties? " Several recent posts have mentioned teeth grinding also. I wonder how that fits into the picture. My other two grind their teeth somthing fierce when sleeping. So does my sister & my mother. Is anyone else following me on this? Maternal line. Until those recent posts I always thought their teeth grinding was a " separate thing " . (Lily didn't.) It's called Bruxism. I have been treating them with Cal & Mag and Vit B complex. Some books recommend also including Chromium as hypoglycemia is often linked to bruxism. Instead I opted to feed them a hypoglycemic diet (high in fiber, protein, lots of vegies & fruits.Low starch and several small meals.) Magnesium is involved in energy production. A deficiency interferes with the transmission of nerve & muscle impulses. Calcium also is important in the transmission of nerve impulses. I had Lily on Magnesium it helped her sleep. Some. (Hard to say what effect it would have had if we would have had a longer time to work on it.) Not sure how it all ties in together yet, but I think theres a connection in all of it. Mom to Angel Lily- Red & Ada ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 I had a recent post mentioning these also. Lily had them too! couldn't see them but don't try to sleep with her, because she was twitching all the time. Not every night (I don't think?) but on those bad nights it was almost constant. She would would wake usually every 1 1/2 hours - bad nights every 45 minutes. Never fiqured out what they were. She would cry out-pissed off about being awaken. Awaken by her own twitching. Mentioned it to the Doc repeatedly-she didn't know what it was. Is this common to the other Mito kids? Is it part of or causing the " sleep difficulties? " Several recent posts have mentioned teeth grinding also. I wonder how that fits into the picture. My other two grind their teeth somthing fierce when sleeping. So does my sister & my mother. Is anyone else following me on this? Maternal line. Until those recent posts I always thought their teeth grinding was a " separate thing " . (Lily didn't.) It's called Bruxism. I have been treating them with Cal & Mag and Vit B complex. Some books recommend also including Chromium as hypoglycemia is often linked to bruxism. Instead I opted to feed them a hypoglycemic diet (high in fiber, protein, lots of vegies & fruits.Low starch and several small meals.) Magnesium is involved in energy production. A deficiency interferes with the transmission of nerve & muscle impulses. Calcium also is important in the transmission of nerve impulses. I had Lily on Magnesium it helped her sleep. Some. (Hard to say what effect it would have had if we would have had a longer time to work on it.) Not sure how it all ties in together yet, but I think theres a connection in all of it. Mom to Angel Lily- Red & Ada ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 when you say tremors , do you mean seizures or are these something completely different?( or are they a type of seizure?) I am imagining in 's case that it is a neuropathy issue or something? He does have seizures but we are sure what kind...we have an abnormal EEG with activity in the frontal lobe...he takes Tegretol for them. just another thing to put on the discussion listen for korson next week... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 when you say tremors , do you mean seizures or are these something completely different?( or are they a type of seizure?) I am imagining in 's case that it is a neuropathy issue or something? He does have seizures but we are sure what kind...we have an abnormal EEG with activity in the frontal lobe...he takes Tegretol for them. just another thing to put on the discussion listen for korson next week... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Deb, Audrey has had tremors for as long as I can remember. There are times when I have been holding her, kick backed in my recliner, both of us napping when shen has awakened me with these tremors. Audrey will still be asleep, but she is having tremors. Since she started having the seizure activity in December and they did the repeat EEG's finding she is having very frequent seizure activity, they said they aren't sure if these tremors might be seizure activity. As with so many of the mito issues, they might be, they might not be. Also, Audrey is a chronic teeth grinder. Just as a little extra info, my mother has also developed head and hand tremors over the years, and Amie, Audrey's mom, also has hand tremors and has had them for almost as long as I can remember. The genetics doctor found all of this very interesting. You sounded tired in your post, I hope things are going somewhat better for you all. Take care and know that we are all in this together one way or another. Thinking of all of you, Kathy, grandma to Audrey,16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Deb, This may not be what you're talking about. does have tremors,they are not always visable, sometimes you wouldn't know it if you didn't touch her. also has seizures and takes Depakote ( I know, I know ! ). Her neuro thinks that the Depakote is partly to blame for the tremors. How is doing with his tube? Do you have any problems with him wanting to bother it? We're having to keep binders on and sometimes even with these she will still get hold of it. Don't forget to TAKE CARE OF YOU! , Mom to tremors? Hi there gangI am so behind on mail but had a question...this morning andrew woke up unusually early and since my husband was already gone to work, I just put him in bed with me to try to get more sleep...I was surprised to feel the bed shaking much of the time...I think he was having tremors, altho I haven't seen any during the day. He has always had these tensing up times...probably myotonic things...where he will look like he is stretching and totally lock for a few seconds being stiff as a board. The other night, I was getting ready to go to bed and in the bathroom...his bedroom is next door and I hear smacking noises...thinking maybe some myoclonic jerking or dystonia or something? anyway, I know alot of your kids have tremors...do any of them just have them while sleeping...you can't actually see these, but if you put your hand on him or are in bed with him, then he is shaking...deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 Deb, This may not be what you're talking about. does have tremors,they are not always visable, sometimes you wouldn't know it if you didn't touch her. also has seizures and takes Depakote ( I know, I know ! ). Her neuro thinks that the Depakote is partly to blame for the tremors. How is doing with his tube? Do you have any problems with him wanting to bother it? We're having to keep binders on and sometimes even with these she will still get hold of it. Don't forget to TAKE CARE OF YOU! , Mom to tremors? Hi there gangI am so behind on mail but had a question...this morning andrew woke up unusually early and since my husband was already gone to work, I just put him in bed with me to try to get more sleep...I was surprised to feel the bed shaking much of the time...I think he was having tremors, altho I haven't seen any during the day. He has always had these tensing up times...probably myotonic things...where he will look like he is stretching and totally lock for a few seconds being stiff as a board. The other night, I was getting ready to go to bed and in the bathroom...his bedroom is next door and I hear smacking noises...thinking maybe some myoclonic jerking or dystonia or something? anyway, I know alot of your kids have tremors...do any of them just have them while sleeping...you can't actually see these, but if you put your hand on him or are in bed with him, then he is shaking...deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 My daughter has tremors. Initially, they were mainly seen when she was sleeping. If you sleep next to her, she is shaking almost constantly. Her tremors are also predominant during the day. They are minimal at times and at times are so bad that she can not eat with dropping everything on her utensil or put sand in a bucket with a shovel or hold a cup and drink. When she is having a bad episode, she can hardly do anything. We have been experiencing an extreme worsening of her tremors lately. The nighttime ones are fairly consistent but there is a great varying in the daytime tremors. She is on lamictal for seizures. She tremors have gotten much, much worse over the past two months which came as a surprise because they have been the same for probably 6 or 7 years. Initially, it was thought that her tremors were caused from the residual effect of brain damage done during the years before we got a diagnosis/medications. However, now I am wondering about that because if that was the case, I would think they would remain static and not change to the degree we have seen them change. Heidi mom to: Holli, 8, mitcohondrial disorder(complex 1, PDH), mental retardation, seizures , 11 Addam, 14 ADHD, LD Quote Link to comment Share on other sites More sharing options...
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