Cerebellar ataxia

[angelo09]

My 3 year has been diagnosed with ataxia does any one out here have any help. He is currently do physical occupational and speech therapy he has a hard time moving around with out holding on to something. We are still under going test this ataxia start out of the blue a couple months after he got the flu mist. Are there any other parents out here with kids with the same thing going on or any help to where to go.

[Jenny789]

There is help out there. You are not alone. As a first place of call go to Ataxia UK. Chin up and keep smiling.

[Thurgolady]

hello Angelo, that must be hard for you. A few questions that might be helpful for us to know to best try to help you: Are you in the UK, is he under a specialist ataxia centre, do you know the type of ataxia or dont you have a diagnosis yet?

look after yourself too,

Gill

[angelo09 in reply to Thurgolady]

We are in US and no he dont have a diagnoses they have ran mri ctscan blood work and gene testing and still trying to figure out whats the underlining cause.He is so independent dontlike much help witch is good but his balance scares me dont want him to fall and hurt hisself

[angelo09 in reply to angelo09]

The only thing that they have come up with is that he has a small vermis but he did everything on time this condition and sypmtoms just started march of this year he was perfectly fine until he got thr flu mist and now all of this

[Thurgolady]

Hi Angelo

I dont know much about other forms of ataxia but hopefully others here will respond. My advice would be to try to get to see a specialist in ataxia - but I dont know anything about neuros in the US.

I dont know what you mean about the flu mist? did he get the flu?

I know that some forms of ataxia can be acute and wonder if this is the case if it came on suddenly?

Gluten can cause gluten ataxia and you might try avoiding gluten in his diet? Unlikely at his age but worth a try in the absence of anything else?

Gill

[angelo09 in reply to Thurgolady]

Thanks for responding n no he didnt have flu they wantd him to get flu mist supposely to avoid getting the flu

[wobblybee]

Hi Angelo😊

ataxia.org is the National Ataxia Foundation. There's an abundance of all kinds of information on the site, including contact numbers for Neurologists and Ataxia Centers in the U.S.

livingwithataxia.org has a sub group for Parents of Children with Ataxia.

Many people in the U.S. use this site. Parents need special understanding and emotional support to help their child cope with challenging symptoms.

Ataxia can be brought on after illness, or trauma. Sometimes a genetic link can be found but more often than not the exact cause is difficult to diagnose. Often an MRI

will show Cerebellar atrophy and that along with certain symptoms makes diagnosis quicker. Occasionally Ataxias only start showing symptoms around a certain age, not necessarily at birth.

He'll probably get tired easily, but at the same time still be an active 3 yr old 😊 It's great that he has Occupational Therapy and sees a Speech Therapist😊 Sometimes it's possible to be referred to a Neurophysiotherapist too.

I hope this is helpful. Best wishes 😊xBeryl

[KT23]

Hi, I'm in the UK and no almost nothing about Ataxia but my three year old girl was diagnosed with it a few weeks ago. I just wanted to say hi and I completely understand how you feel about the worry of them falling over! My little girl starts school next year just after she turns four and I am petrified at the thought. We too are still having tests but she is strong willed and determined so it helps, although I don't always see this as a good thing when I want to help and she doesn't want me to! Good luck with everything. 😊❤

[angelo09 in reply to KT23]

Hi kt23 yea ny son is very independent he is actually n school and loves it he hates help and want to do everything on his own. All we can do is keep it in gods hands and love them with all we got. Hope all turns out well for you all too.