Morgan's mum

[Lemondavies2015]

Morgan has AOA1 and is 11. Anyone have experience of this strand of ataxia?

[cjpotter]

Hi,

No experience of this type of ataxia that I know of as we still have no exact diagnosis. May I ask you how long it took to reach this diagnosis and where your son was diagnosed?

We are still searching for answers.

I hope you find what you are looking for from this post. Some really useful information appears here.

Best wishes.

[Lemondavies2015 in reply to cjpotter]

I started noticing differences from about 18 months, small milestones compared to his brother, he was generally slower, but being a 2nd child, everyone thought I was being overprotective. As he got to about 3, he was clumsier and my health visitor believed me when I said he wasn't right. Referred to paediatrics they said he had dyspraxia, but referred him to a neurologist eventually, because he appeared to have absences. When we eventually saw the neurologist, she said straight away he was ataxic, had MRI and blood tests( including genetic) to confirm which type. He was diagnosed at the age of 8. He is now 11 and in his wheelchair all the time. There are different timescales of progression, but his seems to be advancing quicker than I've looked into.

Hope you get your answers and just keep fighting. Supportive Physio's and other therapies is an invaluable help! X

[cjpotter in reply to Lemondavies2015]

Thank you for responding.

My daughter is my 2nd child too. She is 6 and has been using a wheelchair for a year and 10 months. She lost her ability to walk in three weeks. It happend very quick.

She has zero balance but is physically very strong and is desperate to walk, dance etc and we hold her up and walk her round so she enjoys those sensations.

We are part of the genomes study so hope that will throw answers eventually our way.

Like you I also knew my child had something more than just being clumsy. Your diagnosis also took a time, so looks like we could be in for a much longer wait. Thank you for taking the time to respond to me. Wishing you all the best. X

[Lemondavies2015 in reply to cjpotter]

Best wishes for the future x

[Litty]

First LOVE the photo. Sorry no experience (and had to look it up - hopeless).

It is horrid when your babies get poorly however big they get (mine late 20s now).

We are all so different and good luck with his therapy x

[Regina75]

I have AOA2. Im 24 but was diagnosed last year in October. I had the symptoms when i was 18/5 going on to my 19th year but it wasn't as bad, i could still walk. But now it has progressed and i use a walker now when going out.

Hope this helps. Regina

[Lemondavies2015]

Thank you. Best wishes for the future! Good Physio' s and other therapies are a great help x

[Regina75]

Where do you and your son live?

[Lemondavies2015 in reply to Regina75]

South Wales.

[Regina75]

Oh my.. I'm from Cambridge and love it!

[Regina75]

Is your son on any medication? I take Gabopentin twice a day. My doctor said it can help the eyes but I feel my eyes have gone more weaker

[Lemondavies2015 in reply to Regina75]

No medication. The neurologist said there wasn't anything to take .

[Regina75]

Im just trying to find as much information as i can. I'm a oung adult and barely know how to hold my life together...

[Lemondavies2015]

It's all new for you still! Talking and asking questions is the best thing you can do. X