Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 is 2, and has worsening tremors of his hands/arms/trunk. Nobody has been able to tell us what causes this, however he does have basal ganglia changes on his MRI. Does anyone know exactly what the cause is? Is there any sort of treatment? IS it something that usually gets worse? We first noticed it in this spring, and it was ONLY when he first woke up. We thought it was blood sugar related (hes had hypoglycemia), but its become apparent that theres no connection. it is still mild, as it doesnt interfere with his daily play and such, but it is now something that happens all through the day rather than the first few minutes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 is 2, and has worsening tremors of his hands/arms/trunk. Nobody has been able to tell us what causes this, however he does have basal ganglia changes on his MRI. Does anyone know exactly what the cause is? Is there any sort of treatment? IS it something that usually gets worse? We first noticed it in this spring, and it was ONLY when he first woke up. We thought it was blood sugar related (hes had hypoglycemia), but its become apparent that theres no connection. it is still mild, as it doesnt interfere with his daily play and such, but it is now something that happens all through the day rather than the first few minutes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Could it still be hypoglycemia? Grace also has low blood sugar, and commonly tremors during the day. She has had a normal EEG and MRI so, for her, there is no apperant reason for it other than the hypoglycemia. There have been many occasions where we are out in public and people tell me that she must be cold because she is shivering (you know the people who think they are helping). I have noticed it alot after she has eaten more candy than usual (sugar crashes) or when she is hungry. Maybe you can try offering more complex carbs during the day and see if there is any change. Usually we give Grace a peanut butter sandwich as soon as she wakes up, and then give her breakfast about a half hour later. During the day she is offered crackers or celery and peanut butter, type snacks. Chunky peanut butter is the best. Other than that I am no help. Sorry Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Could it still be hypoglycemia? Grace also has low blood sugar, and commonly tremors during the day. She has had a normal EEG and MRI so, for her, there is no apperant reason for it other than the hypoglycemia. There have been many occasions where we are out in public and people tell me that she must be cold because she is shivering (you know the people who think they are helping). I have noticed it alot after she has eaten more candy than usual (sugar crashes) or when she is hungry. Maybe you can try offering more complex carbs during the day and see if there is any change. Usually we give Grace a peanut butter sandwich as soon as she wakes up, and then give her breakfast about a half hour later. During the day she is offered crackers or celery and peanut butter, type snacks. Chunky peanut butter is the best. Other than that I am no help. Sorry Monitor your Hotmail inbox from MSN Messenger while chatting with friends – see how! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 We deal with this issue as well. Asenath, Zipporrah, Luke, and I have all had this. The reason I have had it was due to fatigue and muscle weakness causing the muscles to work too hard and thus shaking. Asenath sounds identical to your son. It used to be that she would only shake after first waking up but then in the past 4-6 months or so it has occurred more during the day as well. I have been told by neurologists that it is hard to explain what causes it but that it is an issue with a communication breakdown from the brain. Not very helpful I am afraid. The person that deals with it the most is my 16 year old son, Luke. He shakes all the time and I see it when he does anything with his hands. He is an excellent artist and thankfully as he uses mostly shading and the side of the pencil rather than the point, he still can so well, although it has been frustrating him of late. I worry with him that it may become worse over time as it has been doing. There are many reasons for tremors and I think even neurologists have a hard time differentiating the reasons for it. Intension tremor, muscle fatigue, neuro-motor planning dysfunction, etc. etc. Definitely keep your docs updated about the issue, but other than OT, PT, there isn't much that can help that I know of. Maybe someone in the group has had something that helps though? The funny thing is that I was thinking about posting on this issue myself today as Luke has been so shaky since his sensory issues have returned. I think we all just want to know the answers to why things happen in our kids and in ourselves. It helps us to deal with it. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Tremor info?? > > > is 2, and has worsening tremors of his hands/arms/trunk. > Nobody has been able to tell us what causes this, however he does > have basal ganglia changes on his MRI. > Does anyone know exactly what the cause is? Is there any sort of > treatment? IS it something that usually gets worse? > We first noticed it in this spring, and it was ONLY when he > first woke up. We thought it was blood sugar related (hes had > hypoglycemia), but its become apparent that theres no connection. it > is still mild, as it doesnt interfere with his daily play and such, > but it is now something that happens all through the day rather than > the first few minutes.... > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 We deal with this issue as well. Asenath, Zipporrah, Luke, and I have all had this. The reason I have had it was due to fatigue and muscle weakness causing the muscles to work too hard and thus shaking. Asenath sounds identical to your son. It used to be that she would only shake after first waking up but then in the past 4-6 months or so it has occurred more during the day as well. I have been told by neurologists that it is hard to explain what causes it but that it is an issue with a communication breakdown from the brain. Not very helpful I am afraid. The person that deals with it the most is my 16 year old son, Luke. He shakes all the time and I see it when he does anything with his hands. He is an excellent artist and thankfully as he uses mostly shading and the side of the pencil rather than the point, he still can so well, although it has been frustrating him of late. I worry with him that it may become worse over time as it has been doing. There are many reasons for tremors and I think even neurologists have a hard time differentiating the reasons for it. Intension tremor, muscle fatigue, neuro-motor planning dysfunction, etc. etc. Definitely keep your docs updated about the issue, but other than OT, PT, there isn't much that can help that I know of. Maybe someone in the group has had something that helps though? The funny thing is that I was thinking about posting on this issue myself today as Luke has been so shaky since his sensory issues have returned. I think we all just want to know the answers to why things happen in our kids and in ourselves. It helps us to deal with it. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Tremor info?? > > > is 2, and has worsening tremors of his hands/arms/trunk. > Nobody has been able to tell us what causes this, however he does > have basal ganglia changes on his MRI. > Does anyone know exactly what the cause is? Is there any sort of > treatment? IS it something that usually gets worse? > We first noticed it in this spring, and it was ONLY when he > first woke up. We thought it was blood sugar related (hes had > hypoglycemia), but its become apparent that theres no connection. it > is still mild, as it doesnt interfere with his daily play and such, > but it is now something that happens all through the day rather than > the first few minutes.... > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 My daughter has tremors that are pretty severe at times. I have been told that they are the result of the high lactic acid that has damaged her brain before we were able to control it with medications. She also has lesions in the Basal Ganglia. She has tremored since birth. At first, it was only when she was first waking up. It is now always constant but it is much worse at certain times....she has many " ups and downs " . She may have a mild tremor for a week and then suddenly have a very intense tremor that leaves her unable to do ANYTHING. She is ten years old. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 My daughter has tremors that are pretty severe at times. I have been told that they are the result of the high lactic acid that has damaged her brain before we were able to control it with medications. She also has lesions in the Basal Ganglia. She has tremored since birth. At first, it was only when she was first waking up. It is now always constant but it is much worse at certain times....she has many " ups and downs " . She may have a mild tremor for a week and then suddenly have a very intense tremor that leaves her unable to do ANYTHING. She is ten years old. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Oh, I forgot to add that my daughter uses a weighted vest to help control her tremors as well as weighted utensils, knuckle weights, and even arm weights that Velcro on. The extra weight helps to make the tremor a little more controlled. We have an entire tremor feeding kit that was purchased by insurance. It included weighted utensils, weighted cups, a plate with suctions cups to hold it to the table when she is shaking really bad. The vest helps a lot with the tremors throughout her trunk. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Oh, I forgot to add that my daughter uses a weighted vest to help control her tremors as well as weighted utensils, knuckle weights, and even arm weights that Velcro on. The extra weight helps to make the tremor a little more controlled. We have an entire tremor feeding kit that was purchased by insurance. It included weighted utensils, weighted cups, a plate with suctions cups to hold it to the table when she is shaking really bad. The vest helps a lot with the tremors throughout her trunk. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Thanks for sharing the helpful information. Asenath also has basal ganglia involvement. Her biggest stroke occurred in it and the surrounding areas of her brain. As for Luke, we haven't found anything abnormal in his brain. Luke's fluxuates in its intensity as well, but he always trembles enough for me to see it. He doesn't want to do any type of OT (not sure he would qualify anyway), but I think it could help him. Along with the tremors he also has hypersensitivity issues that cause him to not want to touch many different things such as jelly, butter, mayonnaise, or other substances like that so he doesn't want to make himself food often (which is causing him to also lose weight). See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Tremor info?? > > My daughter has tremors that are pretty severe at times. I have been told > that they are the result of the high lactic acid that has damaged her > brain > before we were able to control it with medications. She also has lesions > in > the Basal Ganglia. She has tremored since birth. At first, it was only > when she was first waking up. It is now always constant but it is much > worse at certain times....she has many " ups and downs " . She may have a > mild > tremor for a week and then suddenly have a very intense tremor that leaves > her unable to do ANYTHING. She is ten years old. > Heidi > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2004 Report Share Posted December 19, 2004 Thanks for sharing the helpful information. Asenath also has basal ganglia involvement. Her biggest stroke occurred in it and the surrounding areas of her brain. As for Luke, we haven't found anything abnormal in his brain. Luke's fluxuates in its intensity as well, but he always trembles enough for me to see it. He doesn't want to do any type of OT (not sure he would qualify anyway), but I think it could help him. Along with the tremors he also has hypersensitivity issues that cause him to not want to touch many different things such as jelly, butter, mayonnaise, or other substances like that so he doesn't want to make himself food often (which is causing him to also lose weight). See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Tremor info?? > > My daughter has tremors that are pretty severe at times. I have been told > that they are the result of the high lactic acid that has damaged her > brain > before we were able to control it with medications. She also has lesions > in > the Basal Ganglia. She has tremored since birth. At first, it was only > when she was first waking up. It is now always constant but it is much > worse at certain times....she has many " ups and downs " . She may have a > mild > tremor for a week and then suddenly have a very intense tremor that leaves > her unable to do ANYTHING. She is ten years old. > Heidi > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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