Rhonda,

I'm in Wyoming, but got sent there (to Cincy - Thanks for the
shorthand; lots easier to spell!) 30 years ago (almost) as they had
the best program in the country for the issues I was having at the
time.

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 fair amount of time just researching the acronyms0, that I started throwing them out too!
>
> DAFO - D=Dynamic.  Not sure why, because it is not like they can grow with the boys.  To me, dynamic suggests that the orthotic can change.  Anyway, PVL is a term I actually just learned yesterday.  We were told that Dillon had gray matter brain damage, but no one had put a term to it until I talked to the PT who works with Dr. Park in St. Louis.  Periventricular Leukomalacia (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 prematurely born infants being the most likely to have this problem. It can only be identified by ultrasound, MRI scan or CT scan of the brain. PVL is caused 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 periventricular means next to or around the ventricles. This area contains important 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 arteries 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 flow 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 alongside the ventricle are damaged and are replaced with fluid, it is called leukomalacia (pronounced loo co ma lay shee uh). PVL is the occurrence of leukomalacia in the periventricular areas of the brain. Although the cysts are not dangerous in themselves, they indicate that nerve fibers from that region 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 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 start 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 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 their head scan that they had at 10 days old.  This right leg is slightly involved, 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 moderate to severe spastic quadriplegia due to PVL that also occurred sometime 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 carried 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 year 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 have a developmental pediatrician, a primary ped, a neurosurgeon, and orthopedic 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 have a neurosurgeon in St. Louis thinking that Selection Dorsal Rhizotomy is the answer, I have an orthopedic doctor who thinks status quo is appropriate, and I have a PT who is trying kinesio taping on both boys.  I am learning every day about different traditional and alternative treatments that I know nothing about (I just heard about ABR and G Therapy yesterday).  I expressed 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 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 for Darian.
> >
> > Sorry this is so long.  Any comments, thoughts, or advice is appreciated.
> >
> > Regards,
> >
> > Rhonda Rosenlieb
> > http://www.babababies.com/view/view.cfm?siteID=9721
> >
>
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-- 


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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