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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