They do have solid DAFO's go to:
http://www.dafo.com/
--- "Kendall D. Corbett" <[log in to unmask]>
wrote:
> Rhonda,
>
> Thanks! I'm kind of a "neurogeek," as my response
> to Heidi showed,
> so any info is appreciated. The D for dynamic makes
> sense to me now!.
> The AFO doesn't actually change as someone grows,
> but it is able to
> move (dynamic) in certain planes with foot movement
> (dorsiflexion and
> planarflexion), rather than being stationary
> (static).
>
> As a matter of fact, I need to call the orthotist
> and schedule an
> appointment to pick mine up next week. Mine is
> probably truly a DAFO
> also, as it's hinged to allow ankle flexion.
>
> On 7/12/07, Rosenlieb, Rhonda (GE Money)
> <[log in to unmask]> wrote:
> > Hi, Kendall:
> >
> > Thanks for the info about Cincy. Did you or do
> you live in Ohio? Also, =
> thanks for the proper term (physiatrist) for the
> rehab doc. It is amazing =
> how much I learn every day on this journey!
> >
> > Acronyms. Sorry. I am so used to people throwing
> them out (I spend a fa=
> ir amount of time just researching the acronyms0,
> that I started throwing t=
> hem out too!
> >
> > DAFO - D=3DDynamic. Not sure why, because it is
> not like they can grow w=
> ith the boys. To me, dynamic suggests that the
> orthotic can change. Anywa=
> y, PVL is a term I actually just learned yesterday.
> We were told that Dill=
> on had gray matter brain damage, but no one had put
> a term to it until I ta=
> lked to the PT who works with Dr. Park in St. Louis.
> Periventricular Leuko=
> malacia (PVL):
> >
> > Why Is PVL Important?
> > PVL is one of the most important causes of
> cerebral palsy and other long-=
> term handicaps. It is primarily seen in premature
> infants with the most pre=
> maturely born infants being the most likely to have
> this problem. It can on=
> ly be identified by ultrasound, MRI scan or CT scan
> of the brain. PVL is ca=
> used by insufficient blood flow to parts of an
> infant's brain before birth,=
> at delivery, or after birth.
> >
> >
> > What Is the Periventricular Area?
> > Within the center of our brains are four small
> fluid-filled areas called =
> the cerebral ventricles. The area just outside the
> ventricles is called the=
> periventricular area of the brain. "Peri" means
> next to or around, so peri=
> ventricular means next to or around the ventricles.
> This area contains impo=
> rtant nerve fibers that carry messages from the
> brain to the muscles of the=
> body.
> >
> > What Is PVL?
> > The periventricular tissue receives its blood
> supply from very small arte=
> ries in the brain. Changes in blood pressure or in
> the ability of the heart=
> to pump blood throughout the body can result in a
> decrease in the blood fl=
> ow to these small arteries. If the periventricular
> tissue does not receive =
> an adequate blood supply, the tissue may die and
> dissolve, leaving a fluid-=
> filled cyst in its place. When the nerve fibers that
> normally travel alongs=
> ide the ventricle are damaged and are replaced with
> fluid, it is called leu=
> komalacia (pronounced loo co ma lay shee uh). PVL is
> the occurrence of leuk=
> omalacia in the periventricular areas of the brain.
> Although the cysts are =
> not dangerous in themselves, they indicate that
> nerve fibers from that regi=
> on of the brain have been lost.
> >
> > This is probably way more info than you wanted.
> Sorry!
> >
> > Thanks for the warm welcome!
> >
> >
> > -----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 rig=
> ht place before intro. I wasn't sure it would be OK
> for me to be here, sin=
> ce it is not me who has CP, but 2 of my sons. You
> all seem like a supporti=
> ve, 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 =
> start having kids. We went through IVF and had 3
> embryos implanted. We we=
> re hoping to have just one child. We were
> surprised, shocked and thrilled =
> when 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=
> to a porencephalic cyst that occurred (on the left
> side) sometime after th=
> eir head scan that they had at 10 days old. This
> right leg is slightly inv=
> olved, his right arm and hand very involved. He
> started walking in Dec 200=
> 6 and is in OT, PT and SLP. He wears a DAFO on his
> right leg. Dillon has =
> moderate to severe spastic quadriplegia due to PVL
> that also occurred somet=
> ime after the 10 day old mark. He started sitting
> up without support a few=
> months 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 ca=
> rried or we help him "walk" by holding him around
> his waist and assisting h=
> im. I have been frustrated lately. Although their
> diagnosis came about a =
> year ago, I think I have finally come to terms with
> it and have been throug=
> h the anger, denial, grieving etc. Now, I am
> KNOWLEDGE HUNGRY and searchin=
> g high and low for what will be the best treatment
> option for them. They h=
> ave a developmental pediatrician, a primary ped, a
> neurosurgeon, and orthop=
> edic doctor. I am frustrated because I am having to
> go out and find possib=
> le treatments for them myself (the doctors are not
> forthcoming with the inf=
> o) and then when I do mention a treatment option, I
> get biased answers. I =
> have a neurosurgeon in St. Louis thinking that
> Selection Dorsal Rhizotomy i=
> s the answer, I have an orthopedic doctor who thinks
> status quo is appropri=
> ate, and I have a PT who is trying kinesio taping on
> both boys. I am learn=
> ing every day about different traditional and
> alternative treatments that I=
> know nothing about (I just heard about ABR and G
> Therapy yesterday). I ex=
> pressed all of these concerns to the developmental
> ped on Friday and she is=
> sending us to see a pediatric rehab doc in
> Cincinnati. She said this is t=
> he type of doctor who will sit down and go over all
> of the possible treatme=
> nt options and determine what is the right one for
> Dillon and the right one=
> for Darian.
> > >
> > > Sorry this is so long. Any comments, thoughts,
> or advice is appreciate=
> d.
> > >
> > > Regards,
> > >
> > > Rhonda Rosenlieb
> > >
>
http://www.babababies.com/view/view.cfm?siteID=3D9721
> > >
> >
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> >
>
>
> --=20
>
>
> Kendall
>
> An unreasonable man (but my wife says that's
> redundant!)
>
> The reasonable man adapts himself to the world; the
> unreasonable one
> persists in trying to adapt the world to himself.
> Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
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