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Parents of Children with Ataxia

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Parents of Children with Ataxia

This group is for Parents who children have ataxia.

Members: 13
Latest Activity: Oct 3

Discussion Forum

Ataxia-Telangiectasia

Started by smhs823. Last reply by Dojan75 Sep 17. 3 Replies

Hi, I'm new to this group. My youngest son (3) has been diagnosed with a possible autosomal recessive ataxia, they believe it is ataxia-telangiectasia (we have an appointment with a geneticist next…Continue

Need advice

Started by Jareny . Last reply by Jareny Jun 6. 5 Replies

Hi! My daughter has seen two neurologists...one regular the other a pediatric. The regular neuro diagnosed her with ataxia but did know which type or cause so he referred us to the pediatric neuro...…Continue

15 m/o with Ataxia

Started by Laur22 Apr 25. 0 Replies

I posted this on the main board but figured I would repost it here! :-)Hello there, I was wondering if anyone would be able to give me some insight as this is new to me. On Jan. 10th 2014, my son…Continue

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Comment by lyd on June 29, 2014 at 7:59pm
My 10 year old daughter has itpr1 cerebellar ataxia and i was told 3rd feb 2014 also they know nothing about it. She's making progress in alot of aspects in her life
She cant walk unaided but can swim! She's learned how to write and draw!
She's been eating by herself since 15mths drinkin frm a cup 18mths, potty trained 4yrs
Ive had her on omega 3 since she was 2 and vit c for nearly 2 years
Comment by maryseas on June 5, 2014 at 9:21pm
Jareny, I have had Ataxia for 13 years and none of my tests are positive. Not one! But I do have ataxia SCA and it took searching for the best doctors around to know this. Ataxia is not rare but many forms of it (SCA, Fredrich's) are very rare and most doctors know nearly nothing about it or how to accurately diagnose it. My hips hurt from time to time because of a deteriorating lower spine (I'm old). Also walking poorly puts a lot of stress on joints and causes me pain at times. Children grow in ways that sometimes causes pain in bones and joints. My daughter often complained of bone pain growing up. There are so many possibilities with your daughter I would recommend that you search for the best Pediatric Neurologist or adult neurologist you can find. How many ataxia children has your pediatric neurologist seen? Ataxia can be caused by cancer. I was told this early on when they were trying to figure out what was causing my ataxia. They told me I could have a cancer that would never be found and would likely not kill me but could be responsible for my ataxia. Ataxia is a serious condition and I would want answers. Go to an Ataxia clinic. These are hard to find but search University Hospitals in Large nearby cities. UCLA and Chicago each have one. There are others.

Moderator
Comment by Alan Thomas on May 25, 2014 at 12:30pm

Route Maps for Rare Conditions Toolkit

http://www.geneticalliance.org.uk/routemaptoolkit.htm


Moderator
Comment by Alan Thomas on May 25, 2014 at 12:08pm

Here to share information.

To help parents, deal with this potentially, "Life-Limiting " condition.

Syndromes without a name UK

http://undiagnosed.org.uk/

Comment by Laur22 on April 28, 2014 at 10:46am

Bert, I am sorry to hear about your son.  The weird thing that my husband and I can't figure out, why this only happens when he wakes up and lasts between 6-12 hrs.  On an everyday basis, one would never guess that he had these times when he woke up and was unable to support himself.  Also, during these two bouts, the only thing that is off is his ability to sit/stand/walk.  He is very aware of what's going on around him, his pupils are fine and he has no slurred speech.  They checked his strength during it and it's completely normal.  I just feel so bad for him because this last time he just knew he couldn't do anything and wanted to be held the whole time.  Thank you for mentioning your first MRI showed nothing.  We will be keeping that in mind!!

Comment by Bert on April 25, 2014 at 12:15pm
My son falls all the time and bumps into stuff constantly. With lots of people around in his preschool he is like a little pinball that bounces off everyone and thing. But he has always been that way, never just woke up and could not walk or sit. I am sorry you have to go through this. Maybe look into the genetics test but it is pricey do make sure you hit your deductible first then get it approved. The insurance will probably deny it at least once too.
Comment by Bert on April 25, 2014 at 12:12pm
I read your comment and am sorry to say I have not insight on this happening with my child. He is 3 and has spino cerebellar ataxia type 6. He did have a MRI which showed nothing. It was not until the exome sequence genetics testing that we found this out.
My s

Moderator
Comment by dancermom on April 25, 2014 at 11:19am

You're welcome, Laur. I will take a look in the next couple of days through the members to find the other parents who recently joined. Soon we shall have more members.

Comment by Laur22 on April 25, 2014 at 11:14am

Thank you for the invite Dancermom!

 
 
 
 

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Blog Posts

I've been recently diagnosed with spino-cerebellar ataxia 2

Posted by Stephanie on November 21, 2014 at 8:40am 8 Comments

I'm dealing with it. It runs in the family so I'm familiar. But I still have lots of questions.

Are there any modern treatments that help? I'm trying Chinese medical herbs, but I've only been taking it a week.

How do I tell my kids?… Continue

Um, hi.

Posted by MilkTea on November 6, 2014 at 7:07am 5 Comments

I joined this site weeks ago...but I am painfully shy and insecure when it comes to seeking out support and help. It took a bit of effort to even set up my profile...I think its because in my head I told myself that if I start becoming active on…

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