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godisnumber1 (@godisnumber1)

Cerebellar Atrophy in Children

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

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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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Replies to "Hi I'm claire from England. My son is 4.5 and just been diagnosed with cerebellar atrophy...."

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?

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

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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