Cerebellar Atrophy in Children

Posted by godisnumber1 @godisnumber1, Jan 14, 2017

My 16yr grandson was dianose with this last June causeing him to have seizures and takeing medication for his seizures. Do anyone know about this disease?

@lisapraska

Cerebellar atrophy in a 5 year old whst to expect?

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Hi just wanted to thank you for sharing your page. You’re very brave. I found it after searching ‘cerebellar atrophy’ which we have just found out our son henry who is 4.5 has.
I read you don’t yet know the underlying cause. Neither do we. What are your daughters symptoms? When did you know something was amiss?

Henry was fine & met all his milestones. At 18 months he still wasn’t walking so we took him to our gp. That was 3 years ago now and his had numerous bloods, chromosomes, Ataxia gene panel, lumbar puncture all were normal.
He had an MRI at 2 which was normal. And another in march this year at 4 and was told it was normal. However on second opinion from gosh we have just found it does show CA.
I’m devastated. We have to wait a year for another scan to see if any changes. He is already on the 100k study. But they are going to do a mitochondrial gene panel & muscle biopsy.
He did take his first steps at 33 months. He walks with a walker now but is wobbly and falls often. He has Ataxia, hypotonia, hypermobility, brisk reflexes. He has strabismus (squint) and nystagmus (jerky eyes). A mild speech delay and overall delay but otherwise his cognitive and understanding are good. He hasn’t regressed and has made a slow steady progress. All symptoms indicate his cerebellum but I can’t understand the deterioration seeing as he made progress.
Well thanks anyway for letting me rant on.
I wish you and your daughter all the best x

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@lisapraska

Cerebellar atrophy in a 5 year old whst to expect?

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Hello @claire1983,

I’m so sorry to learn about your son’s diagnosis; I can only imagine, as a parent, how devastated you must feel.

I would encourage you to view this conversation, “Cerebellum Brain Atrophy” https://connect.mayoclinic.org/discussion/cerebellum-atrophy/ and I’m tagging @howardjames, @pec2884 @dmkmom04, @menville, @lindal, @tonyc @tonyc55, @ldrake101, and hope they will return to share their insights with you.

While we wait for members to join in, you might also wish to to view this Mayo Clinic news article about autoimmune cerebellar ataxia: http://mayocl.in/2mX9Off

@claire1983, I want to invite you to join our Caregivers group here: https://connect.mayoclinic.org/group/caregivers/. You will meet many people who are looking after families, friends, or the chronically ill, and I’m certain, you will find some comfort in reading their stories, as well.

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Same with me I cant get straight answers out of anyone.

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