Hi my name is Vicky and I have a 19 month old little boy who has been diagnosed with Ataxia. The doctors aren't sure what the cause is. We are going to see some specialists to figure things out. I hope to find answers soon.
Vicky, There is one test that you the mother can take it is called RBC thiamine. If you are deficient in thiamine your breast fed infant can get infantile beriberi.
Dear Vicky, Hope you get things sorted out! Thinking of you and your son..., ;o)
Also, a HUGE welcome to this site! There are wonderful people on here who can offer support and understanding!
Hello Newbee…Welcome!
Vicky, I am a 58 year old guy diagnosed at 55. Looking back over my life I realize that I had Mr. A as I call him my entire life. I can remember I had difficulties with my hand writing and teachers ordering a device that was supposed to help me. My hands have always shaken and the list goes on. Where I am headed is you have found the place to go for information. The doctors cant give you all of the answers to the small things. We can. We are a loose net group but, we swarm like a bee hive when someone emails in. Don't be alarmed at his age I made 37 years as a highly regarded police officer in America. Even with the hand trembling I could still score perfect with a firearm. We are here for ya.
Blessings
Randy
It saddens me to hear that such a young little boy has been diagnosed with Ataxia. Sounds like you will leave no stone un-turned. That's the spirit.
Hi Vicky my daughter was diagnosed around 19 month she is now five and they still don't know the cause of it. After numerous blood tests scans gene tests that have all come back normal. Good luck and hope you find the answers you are looking for. Even though they haven't found a cause Samantha is pretty much like her peers in a mainstream school her learning and development is up with her peers she just struggles with fine motor activities like writing cause of the tremors in her hands but her physio and Ot are really good. I suppose I am saying to you if they can't pin point the cause they are still things that can be done.
Hi! My son has ataxia too. He had problem when he was a baby. He is 3 years old now.
Vi don't know pricise diagnosis.
Hi Vicki
Welcome !
Regards
Barney
Hi Vicki!
First and foremost - Welcome! I was diagnosed around 37 - I'm just turning 43 now - but, like Ran, looking back and talking to my parents I've had Ataxia all my life. They thought I was a klutz, but now things are in a different light. Having said that, it hasn't really stopped me from doing anything. It seems like you are looking at everything to try to figure out what is going on with your boy - sorry, I don't have anything to add there other than to say be strong and the people on this site are here for you!
Brian
As someone whose ataxia manifested at 50, I can't imagine how difficult it would be developing it as a child. Hope you find some answers.
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.
Contrary to what some people think and with all respect due to their opinion, I believe that it might be easier to adapt to ataxia or any health problem as a very young child than as an adult. Their little bodies adapt right away, there is no old habit to fight, no thinking “I used to be able to do this or that.” they do not know any better.
I used to volunteer in a daycare for handicapped children and I never ceased to wonder at their abilities. Some of them, I was sure would never learn how to do certain things, but regularly, they proved me wrong. They all, somehow, always found a way to solve their problems. And the most marvellous thing was that they were always happy, playing like any other child and enjoying themselves. Children are amazingly resilient.
Vicky, my heart still goes out to you and your little one and I send my best wishes to you and your family.
Great comments, Cicina! ;o)
Hi Vicky,
Welcome to this wonderfully supportive network. How difficult and challenging for both you and your precious little boy. I, too, was terribly klutzy my whole life. Hopefully, you’ll learn and feel a little better when you have some answers. Meanwhile, let us all provide at least a listening ear and sounding board. It’s awful to be alone and you will never be alone, here! Love and hugs, Ellen
Vicky,
Here is a article by Wikipedia on beriberi see the section on infantile beriberi you can observe if any symptoms match.
Hi Vicky!
I would just like to agree with everything Cicina said.
Love and best wishes xB
Welcome Upmichmom!
Lots of great comments here already. My two cents: Evaluate what your son is eating. Do some research. You might be able to turn it around early for him.
Take care!
Im 38 and doctors aren't sure what cause mine also. I've had it for 4 years but got diagnose 3 years ago.So far im doing fine.