Hi Anu,
Atrophy means that her right arm and leg where smaller because of lack
of use. With the e-stim assisted Pt were were able to skip the tendon
cutting surgery on her leg. Take her to a specialist that deals with
kids having CP - I had a regular orthopedist that said she needed at hip
replacement at 14 - he said her hip bone was not in the socket right -
which is hip dysplasia. I went to Children's hospital here in DC - and
saw a Dr. Tosi - who said Amber hip was normal for having CP and the
pain she was having was from Micromuscle tears because of pushing the
exercising in gym class. She is 23 now and doing great. Plays Quidditch
( Harry Potter Game on broomsticks) at VCU - where is going to grad
school.
Trisha
-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
Of Anu Arsalo
Sent: Tuesday, February 16, 2010 2:06 PM
To: [log in to unmask]
Subject: Re: Rare: Intro/ ? hip dysplasia
Hi Trisha,
What kind of athropy was your daughter facing, How do I know if Tuisku
has athropy and how do I stop it. California Children's Services
stopped
giving Tuisku PT long time ago. And the reason that we didn't get the
e-stim was because the therapist didn't send us the paper work quickly
enough although we were explaining to her that our insurance was
changing.
I wonder if we should get physical therapy again and try to get it
through
our insurance instead. Tuisku also has right hemiplegia.
What kind of surgery was Amber able to avoid? I don't understand much
that
goes on with CP because I have been so focused on Ds. Hip dysplacia
seems
to me a structural anomaly, and I don't see how that could be fixed or
helped with PT or e-stim, but I could be way wrong. I'm worried that
we
don't even do enough streching exercises with Tuisku to help her prevent
tightness in the the future. I'm also worried that her CP isn't
taken seriously enough, because people have low expectations for her
because
of the Ds. It has happened to us before regarding OT.
Thanks a lot,
Anu
On Tue, Feb 16, 2010 at 10:52 AM, Trisha Cummings <[log in to unmask]>
wrote:
> Hi Anu,
>
> You might see if you can still get her the e-stim - our therapist
> billed it as PT - since she did the pt with the e-stim machines on
her.
> Amber avoided all surgery - and it reversed the paralysis and the
> atrophying. Even if you could do it after the surgery - it would help
in
> the future.
>
> Trisha - Mom to Amber 23 - right hemi
>
> -----Original Message-----
> From: Cerebral Palsy List [mailto:[log in to unmask]] On
Behalf
> Of Anu Arsalo
> Sent: Tuesday, February 16, 2010 1:47 PM
> To: [log in to unmask]
> Subject: Re: Rare: Intro/ ? hip dysplasia
>
> Thanks Dawn for your story. It's good to know. We won't even know
> until
> Friday if she is a candidate for surgery, but the referring doctor
> seemed to
> think so. How long was your daughter in pain?
> Anu
>
> On Tue, Feb 16, 2010 at 10:24 AM, Dawn Cottone <[log in to unmask]>
> wrote:
>
> > hello Anu,
> > my daughter has mild CP also , she had hip surgery when she was
6.
> She
> > had what is called a Osteotomy, it wasn't actually the same type of
> hip
> > surgery your daughter will have but she needed phsycial therapy for
> over 7
> > months. She also had to go back a year later to take out the
hardware
> so it
> > wouldn't stunt her growth. It was a very tough time, she was
> uncomfortable
> > and my husband and I had a hard time seeing her in pain. but it is
> almost 3
> > years and she walks so much better and her balance is better. she
even
> > thanks us for having the surgery done. so my point is it may be
tough
> at
> > first but I think your daughter will benefit from it.
> > Dawn Cottone
> >
> >
> >
> >
> > ________________________________
> > From: Anu Arsalo <[log in to unmask]>
> > To: [log in to unmask]
> > Sent: Tue, February 16, 2010 11:10:03 AM
> > Subject: Intro/ ? hip dysplasia
> >
> > Hello,
> > My name is Anu and I have a 10 year old daughter Tuisku who has mild
> CP.
> > Her
> > right ventrical is abnormally enlarged and that has effected her
left
> side.
> >
> >
> > This was diagnozed at 3, but I new since she was a baby that
something
> was
> > wrong. I just wasn't take very seriously. My daughter also has
Down
> > syndrome and that has been our main concern. Tuisku walks with a
limp
> and
> > is all together lobsided, her ankle does not flex well, her left
leg
> > appears shorter and shoe size is smaller. Tuisku wears shoe
inserts,
> and
> > at
> > one point was recommended more extensive support, but that was
pulled.
> She
> > was even recommended e-stim, but the insurance didn't cover it.
> >
> > Now Tuisku has started to walk with more and more a limp, she
> complains
> > about pain daily, her back hurts but especially her hip. We saw an
> > orthopedic doctor who told us that she has hip dysplasia and might
> require
> > surgery. We will see a specialist this friday to find out more.
> However,
> > I
> > wanted to reach out here to see if any of you have had this done to
> your
> > children and could share about your experiences.
> >
> > My daughter is active and independent. She can walk, run and ride a
> bike.
> > She is an avid swimmer. It is my understanding that this surgery
will
> have
> > a very long recovery time, she might have to be in a body cast for
> long
> > time. I hope somebody has better news for me. Also did the surgery
> work?
> > Was it all worth it.
> >
> > Thanks in advance.
> >
> > Anu and Tuisku (10, CP and Ds)
> >
> > -----------------------
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