Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 I must have not been paying attention when that question went out. MY daughter Samya never had tremors her entire life (8 and a half years) but she did get them bad the last 2 months of her life when she had the final crisis that took her life. I am sure how bad they are depends on the form of mito. My girls , Samya and Leanna have the T8993C mutation. Samya was very weak and sick for about a month very bad at home deteriorating. I will never forget that the first big sign that I had me panicked was her having tremors in her hands while she was trying to do some homework. Ironically, she had missed so much school (a month at that point) and was trying to keep up for the day she would go back, which never happened. I sat and watched her do a crossword puzzle and her hand shook so bad and she could not even finish writing her name. That night, she had trouble breathing, was intubated and died 33 days later. FAST. I know now for sure it is mito related because she had involuntary movements severe the last 4 days of her life while she was unconscious. I believe that the brain is suffering in its ability to dictate movement correctly, causing tremors, involuntary movements etc. The problem I think lies in the basal ganglia of the brain which is supposed to control these involuntary things, like breathing, coughing and muscle control without us being conscious of it. When Leanna was 4 she had mononucleosis and then got encephalitis. That was what they thought then because neither girl had a diagnosis back then. Now we know it was a crisis from mito causing ataxia .I remember Leanna had slight tremors in her hands that went away upon recovery. Once in a while I notice it very mildly during finger fatigue in writing or coloring. It breaks my heart how hard it is for our kids to do simple things like that when others take it for granted. When leanna can color an entire picture, which doe not happen very often, I am beyond excstatic. Oh the simple things that make us happy. I definitely believe us mito parents live in our own little world where not many people can relate to us. Thank God for each other and our support group. I , too, want to know if there are meds , in case I need to worry about it in the future once again. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: fairgrovejoe Sent: Tuesday, April 20, 2004 6:45 PM To: Mito Subject: Tremors??? I have ask a simular question not too long ago. If tremors were common with Mito. I got some great replies! Now I was wondering are there meds for tremors? My son who just turned 5 years old, tremors very often in both hands. He had his OT screening today, getting ready for kindergarden. He scored a wopping 21%. Mostly because of his tremor. Simple things such as tracing a line is impossible for . He can color for 2 minutes and be tremoring so bad he can not grip the pencil. Yet there are morning he tremors the second he wakes up! Our doctors do not seem to be concerned. The only test they do is hold out their pencil and have grab it. Are there any medications that help with tremor? Why do Mito kids tremor? Any help would be great! Tamara Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Good morning: My 16 yr old son developed a tremor at onset of puberty- just went through more testing, and they are trying to tell me it is "just an essential tremor"- not...I will wait and see what his dev. ped says after she reads the test results. Cindy-GA Tremors??? I have ask a simular question not too long ago. If tremors were common with Mito. I got some great replies!Now I was wondering are there meds for tremors?My son who just turned 5 years old, tremors very often in both hands. He had his OT screening today, getting ready for kindergarden. He scored a wopping 21%. Mostly because of his tremor. Simple things such as tracing a line is impossible for . He can color for 2 minutes and be tremoring so bad he can not grip the pencil. Yet there are morning he tremors the second he wakes up!Our doctors do not seem to be concerned. The only test they do is hold out their pencil and have grab it. Are there any medications that help with tremor? Why do Mito kids tremor?Any help would be great!Tamara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Good morning: My 16 yr old son developed a tremor at onset of puberty- just went through more testing, and they are trying to tell me it is "just an essential tremor"- not...I will wait and see what his dev. ped says after she reads the test results. Cindy-GA Tremors??? I have ask a simular question not too long ago. If tremors were common with Mito. I got some great replies!Now I was wondering are there meds for tremors?My son who just turned 5 years old, tremors very often in both hands. He had his OT screening today, getting ready for kindergarden. He scored a wopping 21%. Mostly because of his tremor. Simple things such as tracing a line is impossible for . He can color for 2 minutes and be tremoring so bad he can not grip the pencil. Yet there are morning he tremors the second he wakes up!Our doctors do not seem to be concerned. The only test they do is hold out their pencil and have grab it. Are there any medications that help with tremor? Why do Mito kids tremor?Any help would be great!Tamara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Good morning: My 16 yr old son developed a tremor at onset of puberty- just went through more testing, and they are trying to tell me it is "just an essential tremor"- not...I will wait and see what his dev. ped says after she reads the test results. Cindy-GA Tremors??? I have ask a simular question not too long ago. If tremors were common with Mito. I got some great replies!Now I was wondering are there meds for tremors?My son who just turned 5 years old, tremors very often in both hands. He had his OT screening today, getting ready for kindergarden. He scored a wopping 21%. Mostly because of his tremor. Simple things such as tracing a line is impossible for . He can color for 2 minutes and be tremoring so bad he can not grip the pencil. Yet there are morning he tremors the second he wakes up!Our doctors do not seem to be concerned. The only test they do is hold out their pencil and have grab it. Are there any medications that help with tremor? Why do Mito kids tremor?Any help would be great!Tamara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Cindy and Tamara, It is my guess that tremors are common in people with mito. Evan (who is 12 1/2) has a fatigue intention tremor when he does his homework after school. Colin, who is 8 and undiagnosed, developed chorea after being sick last year and is struggling to get full fine motor control back. I decided to homeschool him because he was struggling with written work and was very stressed by his loss of fine motor skills. Before the chorea he had beautiful handwriting and was very talented in art. Quote Link to comment Share on other sites More sharing options...
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