Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 DOMS, delayed muscle soreness, is common in mitochondrialand metabolic myopathies. This can result in extremely tight muscles for days which I've had most of my 67 old life. The usual drugs don't work for me (baclofen, soma, etc) but valium is helpful. Kava Kava some find a little help. Also long hot baths. And when I can afford it, only a deep tissue massage by St 's practioners. The other types of massages and accupunture don't help me at all.. Some mild strecthing floor exercises might help. It's trial and error tinkering to find out what works Ray Volpe NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 DOMS, delayed muscle soreness, is common in mitochondrialand metabolic myopathies. This can result in extremely tight muscles for days which I've had most of my 67 old life. The usual drugs don't work for me (baclofen, soma, etc) but valium is helpful. Kava Kava some find a little help. Also long hot baths. And when I can afford it, only a deep tissue massage by St 's practioners. The other types of massages and accupunture don't help me at all.. Some mild strecthing floor exercises might help. It's trial and error tinkering to find out what works Ray Volpe NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Darla, It sounds like you are doing everything that you can. We did a lot of massage and stretching with Wyatt. We continue to do that. The only other thing I can think of is maybe a warm bath before stretching to try and loosen the muscles a little more. I do think porrah is a little young to do muscle relaxants and botox, but that is my opinion and I am not a medical doctor. I just play one like the rest of us- haha! If you are really concerned the doc who would take a look at her muscles would be a PNR doc. I'm pretty sure that is the initials. I think the other name they go by is a neuromuscular doc. There is a great one here in Minneapolis who is associated with Gillette. He is one of the top 10 in the nation. Take care and keep doing what you are doing. Geri-Anne and Wyatt, Complex I-- - In Mito , " Darla Klein " wrote: > > What all experiences do you guys have with tight muscles? Asenath always had the opposite but I did have some experience with tight muscles in my adopted son Marquis. Due to cocaine inutero he had tremors and tight muscles until he was about 9 months old. But, Zipporrah now has tight muscles due to her stroke episode. She is getting therapy for it and I am massaging and stretching her daily, but sometimes she is so tight and crabby. Her arching is due to muscle tightness we believe now also. She hates to round her back and nursing is harder to do lately too. She does much better when I lay down and she can lay flat on a bed by me. If I nurse sitting, she fights me and is very crabby. Her reflux is getting much better with the Prilosec so I don't think it is that. Her shoulder, neck, arm, back, and hip are all very tight. I am worried about how tight she may get in the future. The therapist has been talking to a physiatrist about Porrah to help know what to do for her. I hope we don't need to start going to get muscle relaxant injections. But I not want contractures either. We do see some fluxuations of tightness in her. Times of the day and her attitude really affect this. Any help is apprecaited. I'd love to hear others' experiences with this issue. > > Darla: mommy to Asenath, Zipporrah, and the gangGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Darla, It sounds like you are doing everything that you can. We did a lot of massage and stretching with Wyatt. We continue to do that. The only other thing I can think of is maybe a warm bath before stretching to try and loosen the muscles a little more. I do think porrah is a little young to do muscle relaxants and botox, but that is my opinion and I am not a medical doctor. I just play one like the rest of us- haha! If you are really concerned the doc who would take a look at her muscles would be a PNR doc. I'm pretty sure that is the initials. I think the other name they go by is a neuromuscular doc. There is a great one here in Minneapolis who is associated with Gillette. He is one of the top 10 in the nation. Take care and keep doing what you are doing. Geri-Anne and Wyatt, Complex I-- - In Mito , " Darla Klein " wrote: > > What all experiences do you guys have with tight muscles? Asenath always had the opposite but I did have some experience with tight muscles in my adopted son Marquis. Due to cocaine inutero he had tremors and tight muscles until he was about 9 months old. But, Zipporrah now has tight muscles due to her stroke episode. She is getting therapy for it and I am massaging and stretching her daily, but sometimes she is so tight and crabby. Her arching is due to muscle tightness we believe now also. She hates to round her back and nursing is harder to do lately too. She does much better when I lay down and she can lay flat on a bed by me. If I nurse sitting, she fights me and is very crabby. Her reflux is getting much better with the Prilosec so I don't think it is that. Her shoulder, neck, arm, back, and hip are all very tight. I am worried about how tight she may get in the future. The therapist has been talking to a physiatrist about Porrah to help know what to do for her. I hope we don't need to start going to get muscle relaxant injections. But I not want contractures either. We do see some fluxuations of tightness in her. Times of the day and her attitude really affect this. Any help is apprecaited. I'd love to hear others' experiences with this issue. > > Darla: mommy to Asenath, Zipporrah, and the gangGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Darla, It sounds like you are doing everything that you can. We did a lot of massage and stretching with Wyatt. We continue to do that. The only other thing I can think of is maybe a warm bath before stretching to try and loosen the muscles a little more. I do think porrah is a little young to do muscle relaxants and botox, but that is my opinion and I am not a medical doctor. I just play one like the rest of us- haha! If you are really concerned the doc who would take a look at her muscles would be a PNR doc. I'm pretty sure that is the initials. I think the other name they go by is a neuromuscular doc. There is a great one here in Minneapolis who is associated with Gillette. He is one of the top 10 in the nation. Take care and keep doing what you are doing. Geri-Anne and Wyatt, Complex I-- - In Mito , " Darla Klein " wrote: > > What all experiences do you guys have with tight muscles? Asenath always had the opposite but I did have some experience with tight muscles in my adopted son Marquis. Due to cocaine inutero he had tremors and tight muscles until he was about 9 months old. But, Zipporrah now has tight muscles due to her stroke episode. She is getting therapy for it and I am massaging and stretching her daily, but sometimes she is so tight and crabby. Her arching is due to muscle tightness we believe now also. She hates to round her back and nursing is harder to do lately too. She does much better when I lay down and she can lay flat on a bed by me. If I nurse sitting, she fights me and is very crabby. Her reflux is getting much better with the Prilosec so I don't think it is that. Her shoulder, neck, arm, back, and hip are all very tight. I am worried about how tight she may get in the future. The therapist has been talking to a physiatrist about Porrah to help know what to do for her. I hope we don't need to start going to get muscle relaxant injections. But I not want contractures either. We do see some fluxuations of tightness in her. Times of the day and her attitude really affect this. Any help is apprecaited. I'd love to hear others' experiences with this issue. > > Darla: mommy to Asenath, Zipporrah, and the gangGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Darla that sounds just like how Shelby started out with tight muscles and right sided weakness. How often are they giving her physical therapy? We had to go up to pt 3X a week for 45 each time plus I was doing the stretches and massages also .. Then we also started Shelby in speech with an oral motor specialist to help with the feeding issues that resulted from this she was 6 weeks old when all of this started. She is 2 1/2 now and very rarely does the tightness happen anymore now she has low tone . We had to use muscle relaxers for a little while but she has been taken off of those. But know we are treating her for migraines so finally she is feeling better. I hope some of this info helps. Muscle tightness What all experiences do you guys have with tight muscles? Asenath always had the opposite but I did have some experience with tight muscles in my adopted son Marquis. Due to cocaine inutero he had tremors and tight muscles until he was about 9 months old. But, Zipporrah now has tight muscles due to her stroke episode. She is getting therapy for it and I am massaging and stretching her daily, but sometimes she is so tight and crabby. Her arching is due to muscle tightness we believe now also. She hates to round her back and nursing is harder to do lately too. She does much better when I lay down and she can lay flat on a bed by me. If I nurse sitting, she fights me and is very crabby. Her reflux is getting much better with the Prilosec so I don't think it is that. Her shoulder, neck, arm, back, and hip are all very tight. I am worried about how tight she may get in the future. & ! nbsp; The therapist has been talking to a physiatrist about Porrah to help know what to do for her. I hope we don't need to start going to get muscle relaxant injections. But I not want contractures either. We do see some fluxuations of tightness in her Times of the day and her attitude really affect this. Any help is apprecaited. I'd love to hear others' experiences with this issue. Darla: mommy to Asenath, Zipporrah, and the gangPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hi Darla, I don't know all the reasons for arching of the back, but I do remember that we were told when the girls were babies that it could be an indication of cerebral palsy. Kaitlin and Emilie were born premature and had bleeding in their brains when they were a few days old, so they were watched carefully by therapists to see if there were any signs of cp. The girls both had the arching, and it turned out they do have cerebral palsy. Emilie also cried and got very stiff when she tried to nurse. We are still not sure exactly what was going on--maybe her muscle tone and problems with coordinating sucking and swallowing just made nursing difficult and frustrating for her. I don't know if she was refluxing, but she probably was very hungry from having trouble nursing, which made her even more frantic, which made her muscle tone higher...a viscous cycle. She had trouble with eating baby food, too. We worked with a great OT and persisted through a lot of tears. One of the things that worked for her was mixing her dry baby food with less liquid than it said on the box. Btw, now she can and does eat anything. It sounds like you are doing all the right things, with therapists involved from an early age. You guys are giving Zipporrah the very best possible opportunities. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hi Darla, I don't know all the reasons for arching of the back, but I do remember that we were told when the girls were babies that it could be an indication of cerebral palsy. Kaitlin and Emilie were born premature and had bleeding in their brains when they were a few days old, so they were watched carefully by therapists to see if there were any signs of cp. The girls both had the arching, and it turned out they do have cerebral palsy. Emilie also cried and got very stiff when she tried to nurse. We are still not sure exactly what was going on--maybe her muscle tone and problems with coordinating sucking and swallowing just made nursing difficult and frustrating for her. I don't know if she was refluxing, but she probably was very hungry from having trouble nursing, which made her even more frantic, which made her muscle tone higher...a viscous cycle. She had trouble with eating baby food, too. We worked with a great OT and persisted through a lot of tears. One of the things that worked for her was mixing her dry baby food with less liquid than it said on the box. Btw, now she can and does eat anything. It sounds like you are doing all the right things, with therapists involved from an early age. You guys are giving Zipporrah the very best possible opportunities. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2004 Report Share Posted February 26, 2004 Hi Darla, I don't know all the reasons for arching of the back, but I do remember that we were told when the girls were babies that it could be an indication of cerebral palsy. Kaitlin and Emilie were born premature and had bleeding in their brains when they were a few days old, so they were watched carefully by therapists to see if there were any signs of cp. The girls both had the arching, and it turned out they do have cerebral palsy. Emilie also cried and got very stiff when she tried to nurse. We are still not sure exactly what was going on--maybe her muscle tone and problems with coordinating sucking and swallowing just made nursing difficult and frustrating for her. I don't know if she was refluxing, but she probably was very hungry from having trouble nursing, which made her even more frantic, which made her muscle tone higher...a viscous cycle. She had trouble with eating baby food, too. We worked with a great OT and persisted through a lot of tears. One of the things that worked for her was mixing her dry baby food with less liquid than it said on the box. Btw, now she can and does eat anything. It sounds like you are doing all the right things, with therapists involved from an early age. You guys are giving Zipporrah the very best possible opportunities. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 The docs and therapists don't think CP is a possibility for Porrah. They feel it is all Mito related. The therapist just yesterday was talking to me able the different ways CP presents with muscle tightness vs. Mito related muscle tightness. (at least their tendencies) She was mentioning how her shoulder was the tightest spot rather than the lower arm/hand being worse. As well as her pattern of weakness in her legs well. The hip rather than the lower leg/foot are tight. The arching is due to muscle tightness in her back as well as an issue to do with a feeling of disorganization in her (hard to explain this issue). We don't think it is reflux related. The feeding issues are also similar to what you described. She hates to nurse when I sit (she would rather nurse while I lay down) and arches and wiggles, kicks, turns her head too far toward my arm, fusses, etc. the therapists have watched her and have seen many sensory issue problems. She doesn't know how to calm herself and doesn't feel comfortable in different situations where most other babies would. They think the stroke episode did more damage than originally thought. Many of the problems she is having remind me of my son Marquis' drug affected symptoms. His mother used cocaine and when he was born he had tight muscles, tremors, and still has issues to do with sensory stuff. Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. I have to take time to cuddle in-between stretches and often have to give her a "snack" at the breast. We have noticed a pattern of kicking her legs while nursing when agitated. Now that I understand some of what is going on in her, things make more sense as to why she does some of the things she does. I feel so sad for Zipporrah having to deal with these issues already at such a young age. She was so good before the stroke episode, and now she really is struggling at stuff that should be easy for her. At least we are seeing improvement still in her cognitive issues and strength. She is starting to look at her toys and her environment, where as she wasn't before. I am so glad I began therapy as soon as possible rather than waiting. Thanks for your help. Darla: mommy to Asenath (4 TODAY!), Zipporrah (4 months) and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 The docs and therapists don't think CP is a possibility for Porrah. They feel it is all Mito related. The therapist just yesterday was talking to me able the different ways CP presents with muscle tightness vs. Mito related muscle tightness. (at least their tendencies) She was mentioning how her shoulder was the tightest spot rather than the lower arm/hand being worse. As well as her pattern of weakness in her legs well. The hip rather than the lower leg/foot are tight. The arching is due to muscle tightness in her back as well as an issue to do with a feeling of disorganization in her (hard to explain this issue). We don't think it is reflux related. The feeding issues are also similar to what you described. She hates to nurse when I sit (she would rather nurse while I lay down) and arches and wiggles, kicks, turns her head too far toward my arm, fusses, etc. the therapists have watched her and have seen many sensory issue problems. She doesn't know how to calm herself and doesn't feel comfortable in different situations where most other babies would. They think the stroke episode did more damage than originally thought. Many of the problems she is having remind me of my son Marquis' drug affected symptoms. His mother used cocaine and when he was born he had tight muscles, tremors, and still has issues to do with sensory stuff. Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. I have to take time to cuddle in-between stretches and often have to give her a "snack" at the breast. We have noticed a pattern of kicking her legs while nursing when agitated. Now that I understand some of what is going on in her, things make more sense as to why she does some of the things she does. I feel so sad for Zipporrah having to deal with these issues already at such a young age. She was so good before the stroke episode, and now she really is struggling at stuff that should be easy for her. At least we are seeing improvement still in her cognitive issues and strength. She is starting to look at her toys and her environment, where as she wasn't before. I am so glad I began therapy as soon as possible rather than waiting. Thanks for your help. Darla: mommy to Asenath (4 TODAY!), Zipporrah (4 months) and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 The docs and therapists don't think CP is a possibility for Porrah. They feel it is all Mito related. The therapist just yesterday was talking to me able the different ways CP presents with muscle tightness vs. Mito related muscle tightness. (at least their tendencies) She was mentioning how her shoulder was the tightest spot rather than the lower arm/hand being worse. As well as her pattern of weakness in her legs well. The hip rather than the lower leg/foot are tight. The arching is due to muscle tightness in her back as well as an issue to do with a feeling of disorganization in her (hard to explain this issue). We don't think it is reflux related. The feeding issues are also similar to what you described. She hates to nurse when I sit (she would rather nurse while I lay down) and arches and wiggles, kicks, turns her head too far toward my arm, fusses, etc. the therapists have watched her and have seen many sensory issue problems. She doesn't know how to calm herself and doesn't feel comfortable in different situations where most other babies would. They think the stroke episode did more damage than originally thought. Many of the problems she is having remind me of my son Marquis' drug affected symptoms. His mother used cocaine and when he was born he had tight muscles, tremors, and still has issues to do with sensory stuff. Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. I have to take time to cuddle in-between stretches and often have to give her a "snack" at the breast. We have noticed a pattern of kicking her legs while nursing when agitated. Now that I understand some of what is going on in her, things make more sense as to why she does some of the things she does. I feel so sad for Zipporrah having to deal with these issues already at such a young age. She was so good before the stroke episode, and now she really is struggling at stuff that should be easy for her. At least we are seeing improvement still in her cognitive issues and strength. She is starting to look at her toys and her environment, where as she wasn't before. I am so glad I began therapy as soon as possible rather than waiting. Thanks for your help. Darla: mommy to Asenath (4 TODAY!), Zipporrah (4 months) and the gang Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. Darla, Just a suggestion . . . Have you tried playing soothing music during therapy? It may be of some help. Chelsea's biggest issue with therapy used to be shutting down, so I would bring her favorite tape (Pooh, of course!) and her player to therapy. I have also found that soft classical music helps calm her when she is agitated, particularly after a seizure. Hope you are all doing well and enjoying your new home theatre system! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. Darla, Just a suggestion . . . Have you tried playing soothing music during therapy? It may be of some help. Chelsea's biggest issue with therapy used to be shutting down, so I would bring her favorite tape (Pooh, of course!) and her player to therapy. I have also found that soft classical music helps calm her when she is agitated, particularly after a seizure. Hope you are all doing well and enjoying your new home theatre system! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Therapy is starting to be hard for her because she gets so upset being stretched and then since she doesn't know how to calm herself, she really gets quite upset. Darla, Just a suggestion . . . Have you tried playing soothing music during therapy? It may be of some help. Chelsea's biggest issue with therapy used to be shutting down, so I would bring her favorite tape (Pooh, of course!) and her player to therapy. I have also found that soft classical music helps calm her when she is agitated, particularly after a seizure. Hope you are all doing well and enjoying your new home theatre system! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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