2 year old has ataxia?

[Jadey2017]

Hi , I am new here and don't normally write posts on these kind of things. I have a 2year old boy who can't Walk, his specialist said she thinks it is ataxia. He had an MRI scan that came back normal as well as normal blood test. He is currently having physiotherapy, using a walking frame and a standing frame. He has an appointment next week to get fitted for a Lycra suit and and some kind of support things for his feet. He hit all his milestones as a baby . When he was 11 months old he started cruising around the furniture, so we thought he would walk for his first birthday, but that never happened. If anything he has gotten worse. He can stand on his own with no support for a long time but wobbles about. I get really annoyed when people in the street say 'he is just lazy', 'I bet he walks when you're not looking' ,' he will be walking in a few weeks'. Sorry to go on, but is anyone else in the same situation??

[KennyH]

Hi jadey,

I really didn't have a clue that 2 year olds could suffer with Ataxia. The MRI scan is interesting, it's through the MRI scan that my Cerebellar Ataxia was identified.

Don't let the opinions of others get you down, most people don't understand it, i think it's because you can't actually see it. I'm sorry i can't be of any help, but i will be thinking of you and the little man.

[Veteran250]

Hi Jadey, you did the right thing posting on here, you will get help and support from different friends on this group, we are all here to help each other..... your little one is not alone, I am 73 and can't stand on my own and I walk with a wide gait, I quite often fall over or lose my balance, I have to use furniture or the walls and door frames to get around indoors, and I use an electric scooter outdoors.

I wish I could walk when my wife wasn't watching, but sadly I don't think it will happen now at my age. Wishing you and your little one my best wishes, try to ignore what people say in the street.

Don. Xx

[Lionpeaches in reply to Veteran250]

Hi Jadey,

My son has ataxia, he did have delayed milestones, sitting crawling etc, but it wasn't until he was 2.5 that it was really taken seriously, at that point he wasn't walking, and was wobbly. He had MRIs, bloods and all came back normal, apart from high ck.

He started walking shortly before his third birthday, although he couldn't take more than a few steps without falling, it also became apparent that his speech was slurred and very slow.

He's slightly more stable now, his tests still all come back normal, and he's nearly twelve. Still no firm diagnosis, just chronic, progressive ataxia, probable spino. Don't lose heart, my son is the funniest, and most determined young man you could ever meet. There's a Facebook group for parents of children with ataxia that it might be worth joining. X

[Litty]

Welome

Try not to worry, but when our babies are poorly, it is so hard. People are really stupid and only now when I am out in my wheelchair can they cope!! It is so wrong and gets me cross when folk think you are drunk. Unfortunately it will not stop. You have to try and ignore and think how understanding some folk are.

Sorry they cannot find a name or cause but it can add to illnesses when you do - testing when you know is horrible.

Really hope things pick-up but sound off here - unfortunately we have all been there, but a little one is even more hard x

[cjpotter]

Hi,

Sadly I have no answers for you and fully understand how "concerned members of the public" can make you feel. I hear everything about my daughter being in a wheelchair from being bitten by a tick, to her legs don't work properly etc. Obviously all of which are untrue.

I would like to suggest that you maybe have another person check the mri as my daughter's was checked in a local a&e we was told there was nothing to worry about and that it was normal. Which at the time was a great relief however sadly this was not the case. When the same mri was viewed by our consultant at gosh he immediately noticed shrinking of the cerebellum which had been replaced with fluid.

I truly hope this is not the case for your wonderful son but do think sometimes it is worth a mention. Wishing you both the very best x

[anihol]

Hi Ataxia doesn't always show on a scan to begin with...just keep pushing to make sure f

You get the correct diagnosis. There are many different forms of ataxia. Contact ataxia UK for support. Anita

[SM5662RS]

Hello

Sorry to hear this he's so young too. My brother has late onset of this condition and he too suffered comments by people when out and about in that they claimed he's drunk as theses are his symptoms. He's found it distressing but easier said then done try and ignore comments.

Best wishes Sharon

I don't normally write on posts either and am new too to this site but so far I've found it very supportive and would recommend keep in touch with other sufferers and carers for support

[ozfloods]

Hoya. I'm also new this posting (this being my first ever on any forum) but I wanted to let you know that I'm also searching for the same answers.

Slightly different story but my 9 year old daughter hit her milestones until two but then seemed to start to become more unsteady and fall more frequently. 'They all develop at different rates'. 'She'll grow out of it'. I heard this all too often and only after she was four did someone actually pay attention (eventually a private paediatrician). Now, after 5 years, we still don't have a clear diagnosis but at least know it's a degenerative spinocerebellar ataxia of some sort. She has progressively got worse and my day to day struggle is to keep her on her feet (she can only move with a wheeled walker to support her) and keep her from giving up on day to day activities anc becoming dependent on our help.

My point is, you're not alone, don't accept 'undiagnosed', pull in the support (if you have any), chase down any assistance (I learned too late nothing comes to those who wait) and get support for yourself - it's a hard road and everyday can be a challenge.

I too joined this forum looking to find others with simulate stories - does anyone know of a group for children with early ataxia?

[Veteran250 in reply to ozfloods]

Hi Oz, I'm no medical expert but in answer to your question about groups for young children with Ataxia I'm sure someone on here a few days ago said . there was a Facebook group for parents of children with Ataxia, but I can't confirm that as I don't do Facebook, but I wish you every success

[Lionpeaches in reply to ozfloods]

Only the Facebook group 'parents of children with ataxia'.

[SMarley]

Hi Jadey2017,

I'm Steph, the Communications Officer at Ataxia UK. Lionpeaches has already mentioned that we have a closed Facebook group, designed to support parents of children who have ataxia. You can gain and share advice with people who understand your situation on this group.

If you would like to join, please email me at [e-mail] and I'll add you straight away.

In the meantime, we always have our Helpline in case you want some specific questions answered / someone to let you know your options. You can read about it here: ataxia.org.uk/use-our-helpline

I hope this is helpful.

All the best,

Steph

[Mango1983]

Hi my son is 4.5 and has Ataxia. He walked at 33 months. It's a long journey and we don't have an underlying diagnosis. We have just found out his brain scan shows cerebellar atrophy.

Wishing you well. And don't care what anyone says. My boy users a walker xx