MOEBIUS1.ORG |
MUSCLE TONE
Chapter 7 - Parent's Guide
Donna wrote:
I hope many of you can share your experience with muscle tone
with me!!! Tessa (age almost 3) recently saw a doc and he
asked me why she has high muscle tone in her legs and feet. I did not
have an answer. We haven't seen a neurologist in a long time but he
referred me to one to find out why. Does anyone have problems with
high muscle tone? Why is it there? Does it matter to know why? Is a
CAT scan necessary to find out why? PLEASE help!
Thanks!! Donna Kremer
I don't know that I have much of an
answer for you, but here is my $0.02. First, let me ask a question: why is
high muscle tone necessarily a bad thing? I would think it could be a
good thing. Don't we want strong muscles in our legs and feet?
Did the
doctor explain to you why high muscle tone might not be good?? Could you
share that with us---I'd be curious to know what he said. (There are plenty
of things about Moebius Syndrome about which I'm sure I'm very
ignorant).
Let me explain where my question comes from. When I
was younger, I had club feet, as many on this list had, and I had to have
the usual multiple operations. Again, many on this list are very familiar
with such things. Anyway, the memory of my younger days leaves me with this
impression: that I did not necessarily have high muscle tone in my ankles
and lower legs. That they were kind of thin and a bit weak. I know for a
fact my ankles were weak---due to weak ankles and a general lack of good
balance, I was never able to learn to ice-skate.
That's why I say that,
if your doctor and I are talking about the same thing, I'm thinking high
muscle tone might not be so bad. I know that, starting about 6 years ago, I
began exercising more, including some weightlifting, which has certainly
improved my (previously flabby) muscle tone. And that's a good thing---I
feel better, it improves my metabolism. I always thought high muscle tone
was good. Others on the list, help us out. Am I going wrong here, and if
so, where?
Kevin
My daughter Lily has high muscle tone in her face. Why, I don't really know. Many other Moebius children do have rigidity of the back and spinal areas. I do not believe that is our problem. We are doing stretch's of her face and mouth with guidance of an oral motor therapist.
Donna,
Grace's pedi has made the same comment about her legs in relation to
her upper body. He said most of the Moebius kiddos he's dealt with
don't have such a disparity. Although I wouldn't classify is as high
tone-it's probably more "normal" as opposed to her weak trunk. So, he
sent us to her neurologist. He did an MRI that showed squat. He just
gave me the summarized view and when I pressed him he just showed he
wasn't very thorough in looking at it. He said her brainstem was
smaller than normal (but typical for Moebius) and that was about it. He
has talked about an EMG, but I don't want to put Grace through a
painful procedure that won't show much. That's what I know.....
BTW, I know you've posted about eyes before. I contacted Toni Hager
after she missed the conference and she sent me her workshop tape on
The Neurological Damage of Moebius. In that she makes a big distinction
between sight and vision and also goes on to say she believes there are
exercises that can correct strabismus (instead of surgery) she has a
webisite-I can give you contact info if you want. She has Moebius and
so do her 2 daughters.....
BTW, since our daughters are close in age, feel free to email me
privately whenever (we met at the conference -I'm friends with Karyn (Jake))
Renee,
What you're talking about is related to muscle tone, as it was
explained to me. Grace's eyes move inward (strabismus) so she had
surgery to release the inner eye muscles so they wouldn't pull her eyes
inward (since the outer muscles weren't as strong). It's the lack of
muscle tone/cranial nerve involvement that prevents Moebians from
laterally moving their eyes. Grace has to move her whole head in order
to see from side to side, although her up/down movement is fine. The
eye doc told me either they'd move laterally or they wouldn't, that
there weren't exercises to help with it. However, Toni Hager says there
ARE exercises you can do. Also, do the kiddos going through body
brushing get that lateral movement? that might be another sol'n. hmmmmm......
Please check the Guide & Manual page for topics.
If you can contribute to the development of this project it will be greatly
appreciated.
The Guide & Manual will constantly be revised and improved with the generous
understanding and participation from all those connected to the Moebius
community.
Feel free to contact us at any time and on any topic.
Our goal is to present an accurate depiction of life with Moebius
Syndrome.