Ataxia in children

[westbank26]

Hi all new to this first post. Just learning about this condition my child has been diagnosed with it, she's only 5. Any advise will be appericiated

[Tiggywinkles]

Hello,

It must be a very difficult time for you if you have just found out about your daughter's diagnosis. Have you been told what type of Ataxia she has? I know you will find lots of people able to give you advice on this forum. I was in my 40's before my Ataxia started. Hope you can get lots of help, Heather

xx

[westbank26 in reply to Tiggywinkles]

Be told it's Cerebellar ataxia. Basically it effects her balance & cordination & speech.

[westbank26 in reply to Tiggywinkles]

If don't mind me asking how does ataxia effect you? And form of ataxia do u have?

[Tiggywinkles in reply to westbank26]

Sorry for the delay in replying. I have late on-set Freidriech's Ataxia, I was in my 40's before any symptoms started and was finally diagnosed at 49. I am now 53 and still able to walk, although very slow and unsteady (only use a stick and partners arm when outside) i have problems doing even the simplest of things and get tired quickly. I find that each day has to be dealt with by what I feel up to coping with, means I can't plan too far ahead.

[HarryB Administrator]

Hi westbank26

Thank you for your post.

There is a wealth of information about ataxia on Ataxia UK's website ataxia.org.uk. Do have a look around!

If you haven't already I would strongly recommend you joining Ataxia UK. It is free to join. You can either join Ataxia UK through the website ataxia.org.uk, phone the helpline on 0845 644 0606 or email the helpline at [e-mail]. There is more information about the helpline at a ataxia.org.uk/use-our-helpline.

Ataxia UK has a closed group on Facebook for parents of children with ataxia. If you would like to join please contact Steph Marley at [e-mail].

Ataxia UK has also produced a leaflet specifically for parents of children with ataxia-

ataxia.org.uk/Handlers/Down...

I hope some of the above information is helpful to you.

Best wishes

Harriet

[westbank26 in reply to HarryB]

Thanks I've had a browse of the ataxia website from that website I came across health unlocked.

[wobblybee]

🙂You might also like to look at 'Pediatric Cerebellar Atrophy Support' on Facebook 🙂 xBeryl

[february]

Dear Westbank26, I'm an adult with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), as I was diagnosed at 49, although I had very minor symptoms starting about 8 years before diagnosis. I'm 63 years young now...,ha! My ataxia effects my gait/balance (I use a cane when I leave my home, but am able to walk, extremely carefully, in my home with out it), dexterity (writing, printing, fine motor skills), speech (slurred), swallowing (sometimes coughing/choking, especially on liquids) and vision (slow to focus). Ataxia effects people differently, depending on whether it's resessively or dominantly inherited or unknown, like mine. My neurologist thinks mine is inherited, but that the gene hasn't been discovered yet. I exercise for strength and balance daily and eat a healthy as possible. Physical and aquatic (pool) therapy have been very helpful for me! I hope you hear from others with a child that is dealing with ataxia or find an on-line support group! My best to you..., ;o)