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1 19th January 02:52
julia_ck
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Posts: 1
Default Outgrow mild cp (flat feet)


My son is 2 years old and was just diagnosed with mild cp (spastic
diplegia). But the neurologist said it was so mild that she didnt want
to "lable" him. Ever since he started walking he has been up on his
toes, he stands on flat feet and walks flat when holding on to
something.

Since he was 20 months i started stretching him, exercising with him,
improving his strenght, balance, coordination, etc.

To make a long story short with INTENSIVE therapy (pretty much every
waking moment of his little life) i was able to stretch his heel cords
and hamstrings to the point that they are more flexible than other 2
year olds, i was also able to improve his balance and coordination
tremendosly(!!!) as well as teach him to to walk heel-toe. he is doing
incredibly well!

However, my question is - do kids with mild cp like his outgrow their
symptoms? Our neurologist said that by the time he will be 5 people
wont know that he ever had it. Is that true? I would LOVE to talk to
someone who has a child with mild cp who was able to overcome the
symptoms.

Please, if anyone had experience like that, please reply.
Julia
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2 19th January 02:52
dave ludlow
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Posts: 1
Default Outgrow mild cp


Hi Julia, my daughter has mixed types of CP - in her early years she
had a "general developmental delay" including mild to moderate
spasticity. She had downwards pointing feet and had to wear special
boots to aid walking, until she was 5 or 6 years of age. The other
type she has is athetoid CP, which affected her limbs, and most
severely, her speech. The athetoid CP in her limbs was moderate and by
the time she was 8, this dominated over the earlier spasticity - which
has never reappeared.

Then, she started to work on the athetoid CP - and over the last 10
years, her walking and hand control has improved remarkably so that
now, you'd hardly know she had CP in her limbs. Her walking is fine;
OK, her running is a bit ungainly and her writing is wobbly, but
otherwise it's hard to tell she has CP - until she speaks. Speech has
been the most difficult thing to get control of but she can now be
understood even by strangers - if they listen carefully.

I think the moral of this rather complicated story is in what our
paediatric neurologist told us: not only is CP a non-progressive
condition, but it can be controlled to a certain extent and over the
years, the visible improvements can be dramatic. This seems to be true
especially of mild and sometimes moderate CP, as in our case, so your
neurologist may well be right. Good luck to you and your son!!

Cheers

--
Dave
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3 19th January 02:52
julia_ck
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Posts: 1
Default Outgrow mild cp


Dave,
Thank you so much for your response. You are the first parent who i've
talked to who already went through what we are about to go through.
Thank you.

I am so glad to hear that your daughter is doing so well!! I am happay
for her and it also give me tremendous hope for my little boy.

The only part thats affected him are his legs. And after reading your
post i remembered that our neurologist said that it will be easier to
correct his gait since its the only thing thats affected. They spent
about an hour with him to see if his speech, hands, congnitive, etc
are affacted... but he scored above his age on all of them.
He just turned 2, can jump up, broad jump (up to 10 jumps in a row),
goes up the stairs without holding rail, climbs, etc.

Dave, I have one question... now he is sleeping in afo's for
stretching and he is REALLY stretched now. however, does the tightness
come back if you dont stretch? will it be a life long thing
(stretching)? How is your daughter deal with it now? Does she go to
some PT or do you do home stretching program? Is she involved in
sports? What type of thereapy worked for you the best? DId she ever
walk on her toes?
Julia
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4 19th January 02:52
dave ludlow
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Posts: 1
Default Outgrow mild cp


She didn't really walk on her toes and could just about place her feet
flat on the ground, with difficulty. She couldn't flex them though so
walking was very difficult - she used to catch her toes and trip over
a lot, sometimes falling quite badly. The special boots helped to
correct her gait and there was a gradual and steady improvement, so
regular therapy was unnecessary. Once the spasticity had gone, it
never returned.

As I said, the athetoid symptoms "took over" after a few years but the
"therapy" for that was simply to stay active and play with other kids
as much as possible, that being the best way for her to learn the
co-ordination that's missing in that type of CP. So any parallels with
your son are limited to the first few years I'm afraid.

Obviously, as the tightness never returned to my daughter (she's now
in her late ****s) that could well happen to your son too. The more
active he is, the better it will be I think, as this will tend to
stretch his mildly affected muscles anyway. The boots alone corrected
my daughter's gait but you should just go with whatever your
specialist suggests - unless the improvements stop.

My daughter can do sports, swimming, bike riding etc. but only at a
"play" level, not in competition... but that's because of her
residual athetoid CP not the spasticity, which went completely. Good
luck!

--
Dave
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5 19th January 02:52
julia_ck
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Posts: 1
Default Outgrow mild cp


Dave,
thank you again for your response. it really sheds a lot of light on
things. i wish i could hear from other parents as well,but i guess
there is not much traffic in this group.
we are thinking of doing some very intensive physical therapy with our
son. its kind of new and we have to travel out of state for it, but it
will give him another push to impove his gait as well as teach us how
to work on his gait.
thanks again
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6 19th January 02:52
susan moskowitz
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Posts: 1
Default Outgrow mild cp (disability)


Julia,
I am delighted to hear that your son is doing so well. Yes, it is
possible for children with mild degrees of CP to improve so much that their
disabilities are undetectable by people without specialized medical
training. Personally, I have a hard time thinking of this as "outgrowing"
CP, since it is usually the result of early and intensive the****utic
intervention, not simply the byproduct of maturation.
As to your doctor's reluctance to label him, think carefully before
agreeing to this. While it would spare him the stigma of a disability
diagnosis, it may also make it more difficult for him to access services and
benefits, should he need them in the future. (Services such as adaptive
physical education classes in school, or the loan of wheelchairs to navigate
through airports or other situations where rapid movement through very large
crowded spaces is necessary.) I am reminded of a high school/college friend
whose CP was so well rehabilitated that we knew each other for several years
before he acknowledged that the "slight problem I sometimes have with my
hands" was CP. His admission came about only when he sought out my advice on
how to handle the fact that he was struggling with note taking in his
college courses. It turned out that he had dropped several classes in the
past but had not thought to register with the school's disability services
office and ask for the notetaker services which were routinely provided to
other students.
I just wanted to provide another point of view on this issue. Good luck
to you and your son!
Susan
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7 19th January 02:52
julia_ck
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Posts: 1
Default Outgrow mild cp


Susan,
thank you for your reply. it definetely gives me another angle to look
from. thank you.
I think you hit it right on the money...this is exactly what our
neurologist said: "when i see a group of 5-6 years old playing soccer,
i can pick out the ones who walked like it as toddlers, but i dont
think anyone esle can."
julia


..
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8 19th January 02:52
mark probert
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Posts: 1
Default Outgrow mild cp


A friend of ours had a similar problem with their daughter. They enrolled
her when she was 2 or 3 in dance classes, and she is a very good ballerina
at the age of 15. She has performed professionally on stage a few times.

My 16 year od with CP likes her, too.
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