I am in need of some advice on ATAXIA... Please

[vanessa2012]

My 2 1/2 year daughter was diagnosed at birth with hypoxic ischaemic encephalopathy grade 2 and seizure disorder..she only had a rate 25% of survival and doctors said if she did survive, she would be severely disabled. this is not the case, she has amazed doctors, by walking, eating and now saying a few words.... to me she is just a normal little girl... but on our last consultation with the neurologist he said that he suspects that she has ATAXIA, and I was wondering if there other parents, or any1 who could advise me on what the future might hold? does it get worse, or better?

[jurgen]

Hello Vanessa,

there are quite a few different types of Ataxia. The main

groups are hereditary and not hereditary, I think

en.wikipedia.org/wiki/Ataxia

Can´t your doc be more specifc ?

Regards

[vanessa2012]

ok, i know its not hereditary... the neurologist hasn't yet diagnosed her with ATAXIA... she's seen by him every 6 months due to HIE grade 2, and seizures she had at birth, which MRI'S shown she had brain damage... on this last consultation, he wrote in his report, that he suspects she has ATAXIA... we are going to see him again in 4 months.... ive been trying to get info on what ATAXIA is... but is very hard... thats why i come here to try to get some imformation.... So anything i find out is a bonus.... thanks in advance....

[HarryB Administrator in reply to vanessa2012]

Hi Vanessa

What a brave and determined little girl you have. She sounds amazing and very lovely! You must be immensely proud of her.

The word 'ataxia' is greek and literally means lack of order. Somebody with ataxia has difficulty with balance and co-ordination. It is caused by damage to a part of the brain called the cerebellum which is at the back of the brain and can be thought of as the body's 'balance box'. Ataxia is a symptom of many different disorders/conditions but confusingly there is also a group of disorders called the Ataxias of which ataxia is the main symptom.

As jurgen said there are both hereditary and non-hereditary forms of ataxia. The majority of the hereditary forms of ataxia are genetic and progressive in nature meaning the child was born with it, the gene having been passed on from one or both of the parents, and it will get worse as the child affected gets older. However, it is possible, and I hope it is the case with your daughter, that she sustained some damage to her cerebellum at birth causing her to develop the symptom of ataxia which is non-progressive and will not get any worse. If there is a very specific insult to the brain, for example a lack of oxygen or a severe blow to the head or a stroke, causing brain damage, that damage will not get any worse unless the person is exposed to a further insult, and through rehabilitation the resulting abnormal function could improve.

Ataxia UK aims to support everyone affected by ataxia, irrespective of the underlying cause. We have a helpline which you would be welcome to phone if you would like any further information. They would also be the best people to advise if you could be put in touch with other parents of youngsters with ataxia. The phone number for that is 0845 644 0606 or alternatively you could e-mail [e-mail].

I hope this has been helpful but please do not hesitate to get back in contact if you have further questions.

Harriet

[Hidden]

Great explanation of Ataxia and how it is related to many disorder/conditions Harriet. I like the statement you make specifying that 'ataxia' can also be the main symptom of 'specific groups' of ataxia disorders. I'm sure many people will find your post very useful.

[jurgen]

Hello "vanessa",

you forgot to tag your question.

Is it ok by you if our Admins, Harry, tagged it ?

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Regards