Diagnosing ataxia

[Tjg18676]

The doctors think my son has ataxia. They thought he had it at 3 years but they did a watch and wait approach. He had a brain scan which showed his cerebellum didn't look right. Waiting for appointment with neurologist. Can children show symptoms at such a young age. I've read up on it and it scares me my son is only 7. Any information would be great

[HarryB Administrator]

Hi

Thank you for your post. I am sorry to hear of your difficult times.

There are lots of different causes of ataxia and it can affect children and adults at any age. I know this is easier said than done but try not to jump to any conclusions/read up on things until you see the neurologist and you know what you are dealing with.

Best wishes

Harriet

[Tjg18676]

Thankyou, I'll try not to worry but it's harder said then done

[SuzQ787 in reply to Tjg18676]

Hi there! My son is now 6 and was diagnosed with CAMTA1 Ataxia at 3yrs old and showed signs since birth. It’s very rare but yes symptoms can show at a young age. I’d love to stay in contact.

[ddmagee1]

I have been diagnosed with ataxia. I had an ataxic gait from when I was a young child and had therapy to improve my walking. They didn’t know what was wrong in my early years, as far as what was causing the problem. When MRI first came out, it revealed an arterial problem pushing in compressing part of my cerebellum. Angiography confirmed the problem, so I was diagnosed with mild Cerebellar ataxia. I would recommend that you be patient and when you see the neurologist that you try to find out as much information as you can going forward. Not knowing is always a difficult place to be, because one’s imagination can dream up all kinds of scenarios.

[Tjg18676 in reply to ddmagee1]

Thankyou

[Lemondavies2015]

I noticed with my son from a very early age, but others noticed small things from about the age of 2/3 years. X

[Lemondavies2015 in reply to Lemondavies2015]

And he was diagnosed at the age of 8 after seeing neurologist, having MRI and genetic testing. Hope you get answers, but you need proper answers and they take time x

[Tjg18676]

Thankyou. How is your son now

[peakerhome]

I don’t know. Mine is ‘late onset’ but, from reading up, there are several varieties. My GP referred me to a neurologist who has now referred me for an MRI and blood tests to confirm. I would advise asking questions, demanding answers to everything you want to know, however small it seems. But only specialists seem to have heard of Ataxia, maybe not your GP. And there seems to be no cure or treatment, no urgency even!

[Veteran250 in reply to peakerhome]

Hi Tjg, Can I suggest that you write down a list of questions you want to ask so that you don’t forget anything, don’t be embarrassed to get your list out in front of doctor or Neuro.

Hoping for the best result for your son and your peace of mind.

Don. 👍😀

[february]

Dear Tjg, I'm an adult with ataxia, which wasn't diagnosed until I was 49, although I noticed very minor symptoms starting at 43 years of age. I've read that children as young as 2 or 3 can show signs of ataxia! I'm so sorry you're dealing with your child possibly having ataxia, as that must be scary for you! Exercise for strength and balance helps me, as well as eating as healthy as possible. Talking with other's that have children with ataxia (on this site) will be very helpful to you! Also physical therapy has been helpful for me! Try not to stress/worry too much, although I'm sure it's hard! My best to you...,;o)

[chico05]

My daughter was 9 when it was Ataxie was confirmed. A couple of indicators (e.g Skoliose) has started already with 6 years.

[Tjg18676]

He has slight scoliosis and there thinking he also has nystagmus. Will they do blood test to find out if it's hereditary or can you get it through a virus. He had norovirus at 2 and half but had it really bad also had a seizure. He has flat feet what turn inwards, he also has autism

[Tjg18676 in reply to Tjg18676]

Thankyou for all the comments. This group is helping me to feel better about things. Will let you know when he finally gets his appointment through

[TimLowThom]

Yes, it can show up at a young age. My son was about that age when it was noted by me. I, also, had episodes at that age. Only thing is...they new nothing about it back in the fifties when I was a kid.

[Victoriousvee]

Wow I just pray that your son has an outstanding neurologists that can monitor the ataxia, sorry to hear this with him being so young. BUT keep him active and encourage him daily, don't be afraid, he is young and can grow stronger regardless of the ataxia, really! When he is tired, he rests, but when he wants to do things, support that, he has a long life ahead of him, just with some modifications I pray that he does well

[Tjg18676]

Still havnt got a diagnosis for my son. He had a appointment to see neurologist but they didn't have his scan results cause the other hospital didn't send them. Gutted cause that was four months after the scans were suppose to be sent. Another three month waiting game

[CorinnaN]

Hi,

My daughter is 3 and with a degenerated cerebellum - ataxia ... She had an mri 3,5 months ago, and have had symptoms the last 6 months until then, she was fine. we are still waiting for the genetic test to get the diagnose. But we are now at a point, when she no longer can walk without her walker.