New diagnosis for my 3 year old

[KT23]

My little girl has just turned three and was diagnosed with Ataxia this week. Reason unknown, she's had two MRIs in the last two years and is waiting on more blood tests, genetic stuff and lumbar puncture. I'm slightly worried about what I've read about Ataxia as it seems to be progressive? Neurologist didn't say what type she has.

[Sammy418]

Try not to worry, my husband has ataxia for the last 30 years. He was 18 when it started (not as young as your daughter) but the outcome they gave us was not good. Even though it has been progressive but not in the way the doctors said it would. There is still such a lot research going on, so hopefully they will find something to help you. I hope you get all the answer you need and find out what kind of ataxia it is, it may take time but you will get there. All the best

[tedjohnson]

Dear KT23

Hopefully you will be in touch with a good neurologist wh should be able to answer many of your questions. The word 'progressive' can be frightening but try not to worry about that as very many people with Ataxia have had it for very many years and are alive and kicking!! Do join Ataxia UK and they will send you a lot of information, and they have a very good friendly help line

My very best wishes to you and your family. Ted

[wobblybee]

Hi KT23😊

There are several different reasons for a diagnosis of Ataxia, being a rare Neurological condition diagnosis can take an extraordinary length of time, and it's not unknown for the cause to stay a mystery.

It's true, Cerebellar Ataxia is considered progressive but an accurate rate of progression is very hard to predict exactly.

In addition to the advice already given, another good support group is livingwithataxia.org and for more information re Ataxia, see the National Ataxia Foundation.

Best wishes 😊xB

[february]

Dear KT23, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, symptoms 24/7) eleven years ago, although I had very small symptoms starting about eight years before diagnosis. Yes, my ataxia has progressed, albeit slowly. Everyone is different and your daughter is so young, there's always the possibility of a cure sometime for her! Have her be as active as possible (maybe Physical and/or Occupational Therapy), as well as healthy eating habits! Try to have a positive out look, although with a child I know this is difficult. I hope you get some additional answers soon! My best to you..., ;o)

[SueMillman Partner Ataxia UK]

Hi KT23, I quite understand what a difficult time this is. As well as funding research into ataxia, Ataxia UK exists to support people affected by the condition. Joining is free (and we won't bombard you with correspondence or requests for donations), and will give you our quarterly magazine which provides information on the latest research, and useful tips on how to live with the condition. You can sign up here: ataxia.org.uk/forms/JoinAta.... You can also find information specifically aimed at parents here: ataxia.org.uk/Pages/News/Ca.... In addition, if you contact Jonathan Evans at the office, [e-mail], he can give you access to our closed Facebook parents group, which I know other parents have found useful. You may also find it helpful to join a branch or support group and or come along to our Annual Conference ataxia.org.uk/Event/2015-at... or one of our regional conferences at some point. Please also feel free to contact our Helpline for support. The number is 08456440606; it is open 10.30 to 2.30 Monday - Thursday. Best wishes, Sue

[KT23]

Thank you all so much for your advise, it's been really helpful. X