motor skills symptoms

[danddd]

my dd9's first noticable symptom was the motor skill bit (everything else followed soon after-anxiety ocd tics etc).

she could not play tennis anymore, she lost all the ability she had, and with it her confidence.

it has been a year and a half and they have still not fully returned (maybe 40%).

i know lots of you have seen the handwriting problem.

has anyone seen any treatment clearly helped their child with motor skills?

also, for those of you who went to the conference, did any of the 3 talk about this symptom?

 

 

 

 

thanks

dan

[norcalmom]

I know it is a symptom of Syndeham's Chorea/St Vitus Dance (so probably severe pandas cases as well). I am wondering if you had cunningham's test done? Did she have a very high CamKinase II?

[justinekno]

My ds has what seems like coordination problems, almost looking awkward in his own body when playing sports. My ds scored pretty high on the Cunningham test - close to Syndeham Chorea's range.

 

I know it is a symptom of Syndeham's Chorea/St Vitus Dance (so probably severe pandas cases as well). I am wondering if you had cunningham's test done? Did she have a very high CamKinase II?

[EmersonAilidh]

my dd9's first noticable symptom was the motor skill bit (everything else followed soon after-anxiety ocd tics etc).

she could not play tennis anymore, she lost all the ability she had, and with it her confidence.

it has been a year and a half and they have still not fully returned (maybe 40%).

i know lots of you have seen the handwriting problem.

has anyone seen any treatment clearly helped their child with motor skills?

also, for those of you who went to the conference, did any of the 3 talk about this symptom?

 

 

 

 

thanks

dan

 

My coordination is HORRIBLE. Quite literally cannot walk a straight line. My handwriting is so small that it's nearly illegible, too. How long has your daughter been experiencing symptoms?

When I was younger (I think eleven, to be exact) I was on an arsenal of pharmaceuticals, so it's hard to say what really made the difference in my motor skills. The one thing that I can say is that the only part of my treatment at that time that I feel did me any good were neuro biofeedback sessions, which oddly enough I have never seen being discussed on this forum..

I have no idea on their availability or anything like that, but it's good for small children since oftentimes the doctor will do the session through what looks like a videogame on a screen. When you look it up online it mostly talks about it helping people control blood pressure, heartrate, etc, etc... but as far as I'm concerned, it just helped me chill out. Now, I'm nowhere near perfect now & I have no idea how severe your child is, but I believe it was those sessions (twice a week) that helped me so much. It's a great way to teach P.A.N.D.A.S. kids how to calm themselves down.

 

_____________________________________________________

 

Edit: Here's a link on it. http://www.umm.edu/altmed/articles/biofeedback-000349.htm

Edited July 18, 2010 by EmersonAilidh

[danddd]

she hasent had cunningham test yet, i assumed that she didnt need it since she already has a diagnosis

but maybe i should have it done, it is interesting, i didnt know there was such thing as a s.c. range!

i have a lot to learn still about that.

i will look into braingym too.

 

emerson,

it is funny you mentioned neuro-feedback.

she actually tried it before we knew about pandas, and it really did relax her too.

it made her really sleepy too, she would almost fall asleep in the car going home.

the only problem was that the psychologist was horrible, and was "searching" for reasons for her problems, not good.

it is hard to find people who do neuro-feedback, i dont know why....

have you tried acupuncture for relaxation?

after we left the neuro-feedback lady (and couldnt find another person who does it), i took her for acupuncture, and she has been going for a year.

she says it calms her, and she actually lays on the bed quietly for 30 min.

anything to help

 

thanks guys

Edited July 18, 2010 by danddd

[EmersonAilidh]

she hasent had cunningham test yet, i assumed that she didnt need it since she already has a diagnosis

but maybe i should have it done, it is interesting, i didnt know there was such thing as a s.c. range!

i have a lot to learn still about that.

i will look into braingym too.

 

emerson,

it is funny you mentioned neuro-feedback.

she actually tried it before we knew about pandas, and it really did relax her too.

it made her really sleepy too, she would almost fall asleep in the car going home.

the only problem was that the psychologist was horrible, and was "searching" for reasons for her problems, not good.

it is hard to find people who do neuro-feedback, i dont know why....

have you tried acupuncture for relaxation?

after we left the neuro-feedback lady (and couldnt find another person who does it), i took her for acupuncture, and she has been going for a year.

she says it calms her, and she actually lays on the bed quietly for 30 min.

anything to help

 

thanks guys

 

It's hard? I've only been to one, & I was recommended to her by my neurologist. Same hospital.

Mine was very intent on trying to "hypnotize" me, but was pretty respectful about it when I declined everytime she brought it up.

I've never been clear on what exactly acupuncture DOES. Basically... All I know is that they stick needles in you. There's a store in a strip mall down the street with a neon "ACUPUNCTURE" sign & a bunch of botched English phrases written on the windows, so I've always just kind of shied away, haha. Thank you for recommending it though!

[Johnsmom]

I wish I could go back in time and see just when this whole pandas thing started for my ds. He has been uncoordinated or delayed with motor skills ever since I can remember. We have just been on the uphill battle the whole time. He still cannot ride a bike w/out training wheels and he will be 9 next month. He is so afraid of it and could care less if he rides or not. His friends come over on their bikes and he runs along side of them. I hate to just make him do it and put him through the anxiety. He told me he just wanted to ride it once so he wouldnt have to do it again.

 

It must be frightening to watch a child lose skills. I feel like we never can gain any.