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RE: Low muscle tone
by nastursim, Jun 02, 2007 12:00AM
Thankyou for all your info. I am awaiting, gosh in this day and age, for a paediatrician appointment as I have changed, so that is not for another month or 2, and only he can refer me back to the neuro.
Her fingers curling appears to be from low muscle tone, although sometimes she can straighten them, they seem to sit curled, like she just does not have the strength needed to straighten them. Her fingers are unlike most baby's, they are not chubby and straight, they each have their own strength, and depending on her tiredness depends on how they will sit and affect her ability to use them. Her pinky's though, they just seem very limp, like the joint between the middle and the end, doesn't work very well at all. Do muscles die off over time if they are not used? The OT said massage and play that uses those 2 fingers, but it is very difficult to single out the pinky's. I don't know, I just worry for her and how she will be, although she is very beautiful. When tired, she still seems to hold one hand fisted, like newborns do.
Do you think that is it possible that it is not CP? I cannot find anyone really who has experience with hypotonia CP, what would the real name be??
By the way, I think you are amazing and very knowledgeable with all the help you give others her on this forum.
Her fingers curling appears to be from low muscle tone, although sometimes she can straighten them, they seem to sit curled, like she just does not have the strength needed to straighten them. Her fingers are unlike most baby's, they are not chubby and straight, they each have their own strength, and depending on her tiredness depends on how they will sit and affect her ability to use them. Her pinky's though, they just seem very limp, like the joint between the middle and the end, doesn't work very well at all. Do muscles die off over time if they are not used? The OT said massage and play that uses those 2 fingers, but it is very difficult to single out the pinky's. I don't know, I just worry for her and how she will be, although she is very beautiful. When tired, she still seems to hold one hand fisted, like newborns do.
Do you think that is it possible that it is not CP? I cannot find anyone really who has experience with hypotonia CP, what would the real name be??
By the way, I think you are amazing and very knowledgeable with all the help you give others her on this forum.
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This is hard to explain. Put bluntly: "What is done, is done." This describes CP. Not all CP is devastating, nor is it all tight and spastic. It may just be as mild as clumsiness or a mild, muscle weakness or low tone. So if someone sya the words "cerebral palsy" to you in connection with your daughter, it would NOT BE anything new. It's just a name put to whatever appearance the damage to the brain has later in life.
This may have sounded garbled. If so, ask more questions. I mean to reassure you about "labels." Quix
Dr's now are looking at muscle biopsy's results. He has been cleared of SMA1 and Prada-Willi Syndrome. I am just anxious in finding out what to do for him.
He is on a drug called Physostygmine (unsure if this is the correct spelling) and is drooling a lot. He is however putting on weight. He is on a ventilator and is fed through the nose.
His hands are curling up and do move much more than when he was born. His arms and legs are still limp and floppy.... A biopsy result is ready for discussion on Monday and I am so frightnened with the news they will reveal.
Can you tell me what I can expect if you can?