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Ataxia Support Network

Hi I’m Wendy


#1

I have actually been on this site and another before this one for many years. I had to make a new profile for privacy reasons.

I am in my early 40s. I have a hereditary SCA, which I have been diagnosed with for about 10-15 years. I have one child, who is 5. We don’t know if he has it, but to be honest, he is starting to show some signs.

The neurologists around where I live are always baffled about my condition. I get a lot of shrugged shoulders. I am usually fine, but I lose balance sometimes. If I’m sick or tired or distracted I’ll have trouble with my balance, speaking, or doing complicated things. I very occasionally have nystagmus. I take adderall and Topamax, which do help with fatigue and general motivation I guess.

My son has already been kicked out of three preschools. He’s the size of an 8-10 year old and seems to be either really smart or gifted. He’s really strong, like one of those guys who carry rocks and throw logs in the highlander games. And he’s like a type A, “bro” type personality. I think the size/strength and the personality don’t gain him much leeway from these preschool teachers. They tell him to do things and he’s like no. They try to make him and he fights them. I keep telling them look just call me but I guess that’s not an option they just don’t like it that he has an attitude. I can’t say that I blame him because it’s not interesting work and the teachers talk to the kids like they are stupid. He’s about to be evaluated by like three different places-speech and hearing, adhd/autism/iq, and then by the school system.

But so like his speech is slurred, not clear, and he has trouble with his motor function. I can’t tell if those things are “big guy” problems or “smart guy” problems or if it’s ataxia. I know he is frustrated.

I put a note on the paperwork for these places to please let me know if they think he has neurological problems and I’ll take him to the university that studies my family. But man, I hate to be thinking about this already. I mean, I am now wondering if he IS ataxic and could THAT have anything to do with his behavior? I just don’t know.

So hi again you guys.


#2

Are you at liberty to say what kind of hereditary SCA do you have? Since the onset of SCA varies depending on its type.


#3

Hi Wendy :slightly_smiling_face: Knowing you have a genetic condition makes you extra vigilant with your children. My daughter is an adult but she has so many niggly health issues, and my link with ataxia is genetic.
Your son must get very frustrated and feel misunderstood, hopefully results of the upcoming evaluations will clarify the problem and lead to a better understanding from teaching staff :slightly_smiling_face: xB


#4

I agree with Beryl. After 3 preschools, it is time to find out for sure if it is ataxia. Since you are concerned, it would be good to know. Also, knowing more might help him fel better about himself.


#5

I would suggest that you and possibly your son get tested for Gluten Ataxia. Not the test for only Celiac sensitivity. There is a thread here somewhere. Best of luck. Sorry but I’m on my phone now and I can’t find it.


#6

I had an Athena panel run many years ago and came up with nothing, but I know its from my family because we have a strong, well documented history going back a couple hundred years. We usually have light symptoms for about 30 years and then have a sudden downturn for maybe 5 years (wheelchair etc) and then we die of heart failure or pneumonia or some such. Not really so bad compared to other ataxias. Those of us with childhood symptoms have the symptoms disappear as we age to come back in our late twenties to early thirties. Then the official onset gets counted.

I did stop eating gluten a few years ago and lost about 30 lbs from that. I did a lot better during that time. I couldnt tell if it was from being lighter or from the gluten. I have not had luck in the past getting drs to recognize what the gliadin test is. It might be worth looking into again.

I’m hesitant to say much if anything about this maybe being the case with my son because he is so large and stubborn, so his difficulties might really just be from those things. And especially since he’s smart I don’t want him to have an excuse to not try hard. If he DOES have ataxia not trying would be the WORST habit to form.


#7

It’s important to know the genetic type of SCA since the inheritance depends on it. There is no such thing as “athena panel” that I know of. Athena is the name of a company. It’s most likely an “Ataxia panel.” To be more specific, there is a “cerebellar ataxia panel.” The hereditary ataxia is autosomal dominant in my case(SCA-6). Some ataxia can be associated with cardiac illness (such as Friedreich’s ataxia).