Vicky,
If you cannot get a diagnosis for your son after seeing a Specialist there is one other doctor that might diagnose your son. His
office is in Lenox Ma his name is Dr Mark Hyman here is a article by him on curing a 2 1/2 year boy of Autism.
http://drhyman.com/blog/2010/05/19/why-current-thinking-about-autis...
Hi Vicky, Welcome to the site & hope you are coping well. My daughter first presented with signs of ataxia at approximately 15mths, she is now 7yrs. Although a cause has not yet been found research is working on finding other causes & hopefully one day there will be an answer for all people with ataxia.
In the main time there are physios and O.Ts as well as other professionals who will help your son live with this condition. At school my daughter has been supplied with I.T equipment to help her with written tasks (which are very difficult for her).
When you go to see the specialist try to bring an other adult with you. Also bring a list of questions with you and a pen & paper with you so you can note anything down.
Good luck, hope all goes well
Dear Vicky, A HUGE welcome to this site! There are wonderful people on here for support and understanding! I hope you have some answers for your son soon! Hugs to you and your son..., ;o)
Hi there Bruce.
I'm Ed, 67 years old and totally frustrated by my condition! I was diagnosed at 58 after a very active, wonderful life. It took me a long time to accept I wouldn't get better (while I got progressively worse). Now I've totally, finally accepted my 'little problem' and now just act in company as if I'm totally normal (which I am), if other people can't accept that they could be walking on eggshells - tough - it's their loss! I can't talk properly now, I can just about get around on crutches, can't write any more,but, what the h*ll, can't change anything so just enjoy life the best you can - while you can!!
Bruce said:
I was diagnosed with Ataxia just recently and like others here suspect that I have had it all my life. I am 72. As a child I always had problems with poor coordination and writing. Was not really able to participate in sports etc.
Dr Hyman is awesome! Highly recommend him!
Steve said:
Vicky,
If you cannot get a diagnosis for your son after seeing a Specialist there is one other doctor that might diagnose your son. His
office is in Lenox Ma his name is Dr Mark Hyman here is a article by him on curing a 2 1/2 year boy of Autism.
http://drhyman.com/blog/2010/05/19/why-current-thinking-about-autis...
Hi Ed,
I read your post that you use crutches I found that a rollator does a better job with mobility. Here is what I use. I bought the one with basket and tray for when I go to a buffet. Basket and tray are easily removed https://www.google.com/#q=3+wheel+winnie+drive
ed okeefe said:
Hi there Bruce.
I'm Ed, 67 years old and totally frustrated by my condition! I was diagnosed at 58 after a very active, wonderful life. It took me a long time to accept I wouldn't get better (while I got progressively worse). Now I've totally, finally accepted my 'little problem' and now just act in company as if I'm totally normal (which I am), if other people can't accept that they could be walking on eggshells - tough - it's their loss! I can't talk properly now, I can just about get around on crutches, can't write any more,but, what the h*ll, can't change anything so just enjoy life the best you can - while you can!!
Bruce said:I was diagnosed with Ataxia just recently and like others here suspect that I have had it all my life. I am 72. As a child I always had problems with poor coordination and writing. Was not really able to participate in sports etc.
Vicky, I just started a subgroup for Parents whose Kids Have Ataxia:
http://forum.livingwithataxia.org/group/parents-of-children-with-ataxia
Please join it.
Hi Vicky I am new here too! I just read your post as I just posted one myself. I have a 15month old son who also is diagnosed with Ataxia. His first time was when he was 12months old and then just this past Friday. My sons blood work and urine test are normal as was his CT scan. We are going for an MRI on the 30th. Thinking of you, as I know how heartbreaking it is!