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What Is The Life Expectancy Of Children Suffering From Cerebellum Atrophy?
Question: we have 2 daughter's with spinal cerebellum atrophy one 10 one 13 what can you tell me about this. they see children's in little rock. but Dr Stephens is very vague. is there a life expectancy?? what else can I expect?? they're home with me. and I do this myself. any suggestions on care I could give them to improve they're life I don't all ready do? they both take pt ot and speech
Brief Answer:
Read below
Detailed Answer:
I read your question carefully and I am sorry about the condition affecting both your daughters.
Regarding the question about life expectancy, it is a little difficult because there is not one single type of spinocerebellar ataxia. There are different types, due to different gene mutations, so prognosis may vary from one type of mutation to the other. There are genetic tests which identify over 20 types (from pathologic studies there have been identified 60 types). If genetic testing has been done in your daughters and you can provide the results perhaps I could add something more specific to their case.
Generally speaking they gradually progress and patients become bound to the wheelchair, most of them in the 2nd and 3rd decade of life, 95% are wheelchair bound by their 40s. Life expectancy is lowered because apart from the mobility issues there is often heart involvement which shortens their life span, usually to 25-30 years of age, but there are cases who live much longer (as I said different subtypes).
As for what you do, there are no cures and if medication is used it depends by their specific symptoms, only to alleviate them. Otherwise it's physical and speech therapy only to help them cope better and be functional as long as possible.
I remain at your disposal for other questions.
Read below
Detailed Answer:
I read your question carefully and I am sorry about the condition affecting both your daughters.
Regarding the question about life expectancy, it is a little difficult because there is not one single type of spinocerebellar ataxia. There are different types, due to different gene mutations, so prognosis may vary from one type of mutation to the other. There are genetic tests which identify over 20 types (from pathologic studies there have been identified 60 types). If genetic testing has been done in your daughters and you can provide the results perhaps I could add something more specific to their case.
Generally speaking they gradually progress and patients become bound to the wheelchair, most of them in the 2nd and 3rd decade of life, 95% are wheelchair bound by their 40s. Life expectancy is lowered because apart from the mobility issues there is often heart involvement which shortens their life span, usually to 25-30 years of age, but there are cases who live much longer (as I said different subtypes).
As for what you do, there are no cures and if medication is used it depends by their specific symptoms, only to alleviate them. Otherwise it's physical and speech therapy only to help them cope better and be functional as long as possible.
I remain at your disposal for other questions.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you I will find out more information.
Brief Answer:
Looking forward to hearing from you again.
Detailed Answer:
You're welcome. Feel free to ask again.
Looking forward to hearing from you again.
Detailed Answer:
You're welcome. Feel free to ask again.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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