"D" is for dynamic, moving instead of the Frankenstein feet of past
orthotics. Dorsal rhizotomies can be controversial because the nerves grow
back and the spasticity comes back. Kinesiotaping, is a nice easy tape on
the body to help facilitate movement.
Rifton equipment is awesome when used properly (that is work with someone
who isn't freaked out by CP movements and removes prompts. Check out the
MOVE program) Children need to move, move, move and with CP kids don't get
stuck on perfect movement, that just gets frustrating. They want to have fun
and should be.
Remember this one adage from someone who has been a therapist a long time,
repeat after me....more therapy does not equate with functional gains. Your
children need more than being poked and prodded, they need fun, swimming,
horseback riding, bike riding (with you and on their own). Children who
spend too much time with medical treatments and in therapy are whiny little
things that can't do for themselves. Doing for yourself is messy, throw
them in sand, dirty, swings, let them wrestle with typically developing
kids. All those fancy treatments have great immediate results but, long
term studies aren't there to show improvement.
Do look for a doc who knows a lot about spasiticity mananagement beyond
cutting tendons. There are many treatments out there with each having their
own pros and cons.
Yep, it's frustrating, we give diagnosis of CP only after all the tests are
done and motor milestones are completed. There are lots of things that look
like CP so, your doctors are being a bit conservative.
And if you are wondering,
I'm Beth t the OT
> -----Original Message-----
> From: Cerebral Palsy List [mailto:[log in to unmask]]
> On Behalf Of Kendall D. Corbett
> Sent: Thursday, July 12, 2007 1:51 PM
> To: [log in to unmask]
> Subject: Re: Intro - Hello!
>
> Rhonda,
>
> Sounds to me like you're on the right track. Since you'll
> probably be at Cincinatti Children's, or somewhere in the
> University of Cincinatti Hospital system to see the rehab
> doc, you might want to check into a consult with a
> neurologist there. It's been almost 30 years (GULP!) since I
> was there, but they had some of the best pediatric
> neurologists and neurosurgeons in the country then.
>
> My wife and I have both seen a physiatrist (rehab doc) for
> some of the issues we have as we age (although we're only a
> couple of years older than you are). CP and middle age (or
> aging in general) is an interesting (and neglected) combination.
>
> You've also thrown me a little on some acronyms, such as PVL and DAFO.
> And I'm known as the "Acronym King" at work! ;-{)} I got
> the ankle-foot orthotic from DAFO, but I'm scratching my head
> on the "D"
> in DAFO and PVL.
>
> In any case, welcome to the list!
>
> On 7/12/07, Rosenlieb, Rhonda (GE Money)
> <[log in to unmask]> wrote:
> > Hi, everyone!
> >
> > I joined a little while back, but decided to make sure I was in the
> > right=
> place before intro. I wasn't sure it would be OK for me to
> be here, since= it is not me who has CP, but 2 of my sons.
> You all seem like a supportive= , interesting, and
> knowledgeable group, so I am glad to be here!!
> >
> > My name is Rhonda and I live in Dayton, Ohio USA with my
> husband and 2
> > 1/=
> 2 yr old quadruplets. I am about to turn 44 (ugh!, so I got
> a VERY late st= art having kids. We went through IVF and had
> 3 embryos implanted. We were= hoping to have just one
> child. We were surprised, shocked and thrilled wh= en we
> found out they all "took" and one decided to split!! The two
> twins, = Dillon and Darian, both have CP. Darian has mild
> spastic hemiparesis due t= o a porencephalic cyst that
> occurred (on the left side) sometime after thei= r head scan
> that they had at 10 days old. This right leg is slightly
> invol= ved, his right arm and hand very involved. He started
> walking in Dec 2006 = and is in OT, PT and SLP. He wears a
> DAFO on his right leg. Dillon has mo= derate to severe
> spastic quadriplegia due to PVL that also occurred sometim= e
> after the 10 day old mark. He started sitting up without
> support a few m= onths ago. He has PT, OT and SLP. He wears
> DAFO's on both legs and uses a= Rifton gait trainer
> periodically. His main mode of mobility is being carr= ied
> or we help him "walk" by holding him around his waist and
> assisting him= . I have been frustrated lately. Although
> their diagnosis came about a ye= ar ago, I think I have
> finally come to terms with it and have been through = the
> anger, denial, grieving etc. Now, I am KNOWLEDGE HUNGRY and
> searching = high and low for what will be the best treatment
> option for them. They hav= e a developmental pediatrician, a
> primary ped, a neurosurgeon, and orthoped= ic doctor. I am
> frustrated because I am having to go out and find possible=
> treatments for them myself (the doctors are not forthcoming
> with the info)= and then when I do mention a treatment
> option, I get biased answers. I ha= ve a neurosurgeon in St.
> Louis thinking that Selection Dorsal Rhizotomy is = the
> answer, I have an orthopedic doctor who thinks status quo is
> appropriat= e, and I have a PT who is trying kinesio taping
> on both boys. I am learnin= g every day about different
> traditional and alternative treatments that I k= now nothing
> about (I just heard about ABR and G Therapy yesterday). I
> expr= essed all of these concerns to the developmental ped on
> Friday and she is s= ending us to see a pediatric rehab doc
> in Cincinnati. She said this is the= type of doctor who
> will sit down and go over all of the possible treatment=
> options and determine what is the right one for Dillon and
> the right one f= or Darian.
> >
> > Sorry this is so long. Any comments, thoughts, or advice
> is appreciated.
> >
> > Regards,
> >
> > Rhonda Rosenlieb
> > http://www.babababies.com/view/view.cfm?siteID=3D9721
> >
>
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