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?

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@claire1983

Hi I’m claire from England. My son is 4.5 and just been diagnosed with cerebellar atrophy. He had a brain scan age 2 normal and one in March this year and told normal, on a second opinion they say shows atrophy!!
He was fine when born and met all his milestones until 1, he had some viral illnesses and his development plateaud. He wasn’t walking at 1.5 so we took him to doctors. They run lots of tests all normal. He eventually took his first steps just before 3. He now walks with a walker and in his isnbut very wobbly, off balance and falls.
His symptoms are: hypotonia, hypermobility, Ataxia wide base gait clumsy falls, brisk reflexes, mild speech delay & global development delay. He had two small holes in his heart which have now closed
He developed strabismus (eyes turn in) and most recently after a balance test nystagmus of a central vestibular cause.
We still do not know the underlying cause for all if this nor his prognosis. Although he is making slow progress.
It’s been 3 years of testing. His lumbar puncture, chromosomes & Ataxia Gene panel all normal. He is now enrolled in the 100k genome clinical trial and may also be tested for mitochondrial disorders.
He does not have any abnormal ‘features’. He occasionally gets a very subtle tremor. He failed Romberg and finger to nose tests
There are just no answers as yet. Which is worrying and frustrating.
I hope you get some answers too. Xx

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My name is Lisa, my son too has been diagnosed with cerebellar atrophy, he is 5 and has all the same delays, he was just diagnosed earlier this year. He is having geonomics testing done at the Mayo Clinic in Minnesota, USA my son is not using a walker or anything like that and I am still waiting on answers too, I am also wondering if you were on any anti_seizure meds during your pregnancy, that might be a link to part of the cause, otherwise I have no idea how this has happened to our children and so few are diagnosed. So sorry for what you are going through, is there anything I need to expect to prepare for?

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Also, I was told my sons brain is normal for a 65 year old but not a 5 year old.

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@claire1983

Hi I’m claire from England. My son is 4.5 and just been diagnosed with cerebellar atrophy. He had a brain scan age 2 normal and one in March this year and told normal, on a second opinion they say shows atrophy!!
He was fine when born and met all his milestones until 1, he had some viral illnesses and his development plateaud. He wasn’t walking at 1.5 so we took him to doctors. They run lots of tests all normal. He eventually took his first steps just before 3. He now walks with a walker and in his isnbut very wobbly, off balance and falls.
His symptoms are: hypotonia, hypermobility, Ataxia wide base gait clumsy falls, brisk reflexes, mild speech delay & global development delay. He had two small holes in his heart which have now closed
He developed strabismus (eyes turn in) and most recently after a balance test nystagmus of a central vestibular cause.
We still do not know the underlying cause for all if this nor his prognosis. Although he is making slow progress.
It’s been 3 years of testing. His lumbar puncture, chromosomes & Ataxia Gene panel all normal. He is now enrolled in the 100k genome clinical trial and may also be tested for mitochondrial disorders.
He does not have any abnormal ‘features’. He occasionally gets a very subtle tremor. He failed Romberg and finger to nose tests
There are just no answers as yet. Which is worrying and frustrating.
I hope you get some answers too. Xx

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Hi Lisa. No I wasn’t taking any medication. He was fine when he was born.
When did your son’s symptoms start? When did he walk?
Henry met every milestone til age 1. He was sitting 5 months, crawling at 9 months, cruising at 10 months. At 11 months he had a bad bout of bacterial infection tonsillitis. I took him a&e 3 times, the first two they said it was viral and no antibiotics. The third trip they confirmed bacterial and gave Antibs. I’m convinced something happened around this time as his progress halted. He would then crawl and fall on his face.X

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@claire1983

Hi I’m claire from England. My son is 4.5 and just been diagnosed with cerebellar atrophy. He had a brain scan age 2 normal and one in March this year and told normal, on a second opinion they say shows atrophy!!
He was fine when born and met all his milestones until 1, he had some viral illnesses and his development plateaud. He wasn’t walking at 1.5 so we took him to doctors. They run lots of tests all normal. He eventually took his first steps just before 3. He now walks with a walker and in his isnbut very wobbly, off balance and falls.
His symptoms are: hypotonia, hypermobility, Ataxia wide base gait clumsy falls, brisk reflexes, mild speech delay & global development delay. He had two small holes in his heart which have now closed
He developed strabismus (eyes turn in) and most recently after a balance test nystagmus of a central vestibular cause.
We still do not know the underlying cause for all if this nor his prognosis. Although he is making slow progress.
It’s been 3 years of testing. His lumbar puncture, chromosomes & Ataxia Gene panel all normal. He is now enrolled in the 100k genome clinical trial and may also be tested for mitochondrial disorders.
He does not have any abnormal ‘features’. He occasionally gets a very subtle tremor. He failed Romberg and finger to nose tests
There are just no answers as yet. Which is worrying and frustrating.
I hope you get some answers too. Xx

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He was over 18 months before he could sit up, didn’t start walking until around 2, he has the unsteady gait, nastigmus, needs glasses, has low muscle tone, speech delay, sensitivity to textures, developmental delays and is still not potty trained. He is 5 but testing says he is mentally around 21/2 to 3 years old. Waiting until spring or summer next year for a second MRI to compare with the first MRI. He starts kindergarten on the 22nd of this month. He is still unable to recognize letters and numbers and cannot write any letters.

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@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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