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godisnumber1 (@godisnumber1)

Cerebellar Atrophy in Children

Stroke & Cerebrovascular Diseases | Last Active: Aug 14, 2017 | Replies (27)

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@lisapraska

Cerebellar atrophy in a 5 year old whst to expect?

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Replies to "Cerebellar atrophy in a 5 year old whst to expect?"

My daughter is almost 7 years old but a brain MRI at age 4 discovered diffuse cerebellar atrophy. How many MRIs have you had done? Follow up MRIs are able to tell if the atrophy is going to be controlled or progressive. What are your child’s symptoms? My daughter has difficulty with balance, coordination, fine & gross motor skills, sensory integration.

He has hypotonia (floppy baby syndrome), vision, hearing, fine motor gross motor problems and developmentally delayed, recently he has been having outbursts of anger, then like a light switch changes back to happy, he is recently diagnosed with cerebellar atrophy, cyclic vomiting, and Developmental delays with no known etiology. He has frequent migraines. Neurologist said as long as he is making gains and doesn’t plateau or decline he should be fine. We will get another MRI next year, do for now nothing to compare to. Waiting on small panel Genomic testing for fragile X syndrome and angelman syndrome, if that comes back normal they will run a large panel Genomic test. He also is not potty trained, and is severly sensitive to textures and foods, very poor eating habits. I.e. chocolate everything.

Hi im new to this group. I am from England. My daughter was diagnosed with cerebellar astrophy 3 years ago. She is now 5. This condition is so overwhelmingly difficult to understand. Im still finding myself searching for information.

Hello, @samantha1986 and welcome to Mayo Clinic Connect. You have posted to the right place.

Here you will meet other people who are seeking information on the same topic. Please meet @lisapraska, @godisnumber1, @nikkikry and @ihatediabetes. By reading some of their posts, you will learn this is a safe place for you to voice ideas, opinions and concerns. These posts on our community pages are also meant to be used as reference tools and a place to seek support from others who are living experiences similar to yours.

@samantha1986, do you have any questions you would like to ask the others? or what information are you seeking that maybe one of our members could possibly answer?

Can you tell us what you find most difficult to understand?

Hi. I’m finding the worst part is thinking I’m going to lose my child before me. As much as I can gather cerebellar atrophy is tissues and cells dying until there’s nothing left. I haven’t spoken yet to one person who has explained the condition to me and what it means for the future. 

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

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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