At what age were your children diagnosed? what were the initial symptoms that you noticed?
what kind of genetics and metabolic tests have they undergone and - Is a regular MRI good enough to diagnose cerebral ataxia? or does it have to be a functional MRI?
Hi Rita
My daughter Meg was diagnosed with Friedreichs last July, just before her 14th birthday. Her problems started a few years previously...panic attacks when expected to walk any distance and a seemingly irrational fear of falling constantly. Looking back I feel it started before this but we put it down to clumsiness and laziness. Hindsight is a wonderful thing eh?! 😕 She was eventually referred to neurology by her physio when she fell and broke her leg in Sept 2014. An MRI showed nothing as you'd expect with Friedreichs, she was diagnosed through various blood tests and genetics confirmed that both her father and I carry the gene.
This must be a very distressing time for you as a parent, I know how we have felt over the last few years. Megs case and our experience is probably very different to yours and so probabaly doesn't help much but please know that there is help out there and support from some brilliant people. Ataxia U.K. have a list of local support groups and the friends we have made and experience we've received have been invaluable. From a medical point of view you'll probably need to fight to get the right treatment and support but it is out there so stay strong!
All the very best to you and your family xx
Thank you, it is soooo distressing. I've been taking her to doctors and clinics, she's had so many tests taken and she's not even 4 years old. It amazes me how many years doctors spend studying and still it takes so long to properly diagnose her.
We're not from the UK but I couldn't find any ataxia groups or clinics in my country. Perhaps I will find them later on.
We've just started taking her to hydrotherapy since she hates phisiotherapy and won't do much with her PT. She absolutely loved being in the water. This surprised us at first but then it made sense - She doesn't have to balance herself in the water! It was amazing how the minute she got in the water she started to smile.
Anyway, thank you for your reply.
Best wishes to you and Meg
my son was 12 when diagnosed but had symptoms for about 3 years before he got diagnosed with CA. He has other conditions which i think masked the CA. Think he got a MRI and some nerve testing was told by one DR that Ataxia is not a condition only a symptom.
Hi
My daughter had a diagnosis of Friedreichs Ataxia last month (aged 9) but we have been pushing doctors since she was about 4.
Isabella had hit all her major development milestones as a baby and toddler but we noticed when she was 3 or 4 that she fell more than other children and was struggling a bit with co-ordination (fastening buttons, drawing neatly, etc). The first time it was very obvious was her first school sports day - she was so different in ability to the other children.
We saw various doctors who spent many years telling us it was Dispraxia but her symptoms such as walking with a wide gait, tiredness, slurred speach, etc got progressively worse. We finally found a Dr who took us seriously and she did a full range of tests, bloods (including genetics), MRI, and nerve tests. It was the genetic testing the gave the diagnosis.
As distressing as the diagnosis has been a world of support has now opened up to us in the form of the Ataxia help groups and access to physios, etc.
I wish you lots of luck getting a diagnosis - don't give up, no one knows your child as much as you do
Helen
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