Cerebral Brain Atrophy

Posted by howardjames @howardjames, Jul 12, 2017

Dear Colleen,
Has there been any progress in finding a reason for cerebral brain atrophy. Howard James was their in Jan. of 2015 and was seen by Dr. Matsomoto who gave him about 4 years to live. I have only connected with Liz in South Africa who has been diagnosed with this. Have there been any headway made for a reason for this or any type of a cure or an arrest of progression. He is now walking with a walker but now is beginning to fall even with walker. We are in our home in Homer, Alaska and will be here on a permanent basis.
Noreen ( wife of Howard James)

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Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dear Lisa,
I’m so sorry about your son!!! Who diagnosed him and did they do a brain MRI? My husband was diagnosed at Mayo Clinic after a referral from his local physician. He was only given 3 to 4 years to live. He was walking then, but progressed from that to a cane and now uses a wheeled cart to get around. He also has trouble talking which the Mayo doctor said he would. Doctor said he would probably die of pneumonia as he would probably aspirate to a lung when swallowing. Noreen

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dr. Bodensteiner, diagnised him. He says his brain is normal for a 65 year old but not for a 5 year old. My son had his MRI done 1 year ago and we have to wait till spring or summer next year for another, he says we have a base but need another to compare the 2 MRI’s. He told me not to search the internet but of course I have, just no solid definition of what to expect until we can get that 2nd MRI done.My son was just diagnosed a few months ago.

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dear Lisa, Please keep me informed as to the second MRI!!! Is the doctor who diagnosed your son at the Mayo Clinic?

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Yes and he just retired, he was pediatric neurology, my son has now been place with Dr. Youseff

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Noreen, did your husbsnd ever take dilantin for seizures?

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@lisapraska

Noreen, did your husbsnd ever take dilantin for seizures?

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Has never had any seizures. Doctor said he probably would not. But I always hesitate to leave him alone. I always make him have his phone in his pocket. Noreen

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Hello Lisa, @lisapraska

I am so sorry to hear of your son’s diagnosis! If you care to share more – what symptoms was your son experiencing that led to this diagnosis?

Teresa

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Developmental delays in all areas, hypotonia, unstable walking, speech impairments, not meeting milestones, 5 yrs old but memtally about 2 1/2to 3 yrs old.

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Also MRI findings

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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@lisapraska How heart-breaking for you! Is there any type of physical therapy that can help with his walking, gait or speech?

Teresa

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@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

Jump to this post

He is getting occupational therapy, speech therapy, physical therapy, basically any type of therapy there is.

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