Last post Fri, Jun 06 2008 11:49 PM by BMWgirl. 16 replies.
Well, services are terrible where we live just 25 miles north of Philly. My son is now 21 and having pain/discomfort problems. The pediatric specialists have not been able to address the problem. Does anyone know of a physical medicine/rehab doctor or orthopod specializing in adults with CP in the Philly/Trenton/Princeton area?
I did my medical training in Philadelphia. . . knowledge about adults with CP is not great there although it's not great anywhere. Here's who I know
My cerebral palsy was actually diagnosed (as an adult, long story) by Dr. Stephen Gollomp at Lankenau. He's a neurologist who specializes in movement disorders.
If you can travel a bit north, Dr. Thomas Strax is a PM+R at UMDNJ who has CP himself. I have met him professionally. He may not see outpatients - the department there would know if someone does however.
The adult PM+R docs I know in Philly are at Magee Rehab and the Rothman and are excellent but there aren't any adult CP specilaists at either place.
There was someone in the Philly suburbs we were sending teens to when they got too old for the DuPont for rehab but I can't remember the name. You could call the DuPont rehab department and ask where they are sending the kids with baclofen pumps when they aged out.
I don't have any specific suggestions but wanted to add my support and solidarity in the frustrating search for care as an adult with a "pediatric" disability (OI)..I still haven't found a specialist (at 28). I hope you find one in your area soon.
I'm 23 and I have CP. I've been seeing the same docs since I was a teen. I got lucky, I'll age out when they retire. While technically they are ped specialists, they actually understand the concerns of adults. Unfortunately for you, they both have offices in DC suburbs and balto city. Baltimore isn't all that far. My PMR is Dr Katherine Alter (www.mwph.org) and my ortho is Dr Andrew Abramowitz (www.mdpedortho.com
Hey, I'm from Philly.....
I was a DuPont kid, but I aged out. I'm now 22 and started having some pain/discomfort problems in my feet after being active in college. If your son is having issues in his feet/ankles, then I would highly recommend a Dr. Keith Wapner at UPenn. He's a genius...and he has two boys with CP so he really knows his stuff.
He's not a CP Specialist per se, he's a foot & ankle specialist....I would only call him if your son is having problems in his feet/ankles. When I called DuPont in a panic (I was a patient of Dr. Miller), he told me to go see him.
You'll have to wait a bit for an appointment, because he's usually booked.
There's a female doctor at UPenn who specializes in CP.....I think her first name is Marjorie or Maggie and her last name begins with a K (sorry).
I was also a Dupont kid:) I thought dr. Miller was great. It was hard to turn 21 cause I knew that they couldn't treat me anymore. Although I still keep in touch with several people from there. My PT gave me the name of Dr Maryann Keenan (orthopedist) who is at HUP.
Also Hadley I think your T-shifts are so cute. If I were you I'd try to get Dupont's gift shop to carry them. I think you'd sell tons of them if you could get them in there.
Also I know for adults the Kessler institute in West Orange is suppopsed to be ranked nationally. I went there for a driving eval and the OT was great in accomadating my situation.
Maryann Keenan!
That's it! That's the name I was trying to get off the tip of my tongue!!!!! Yay! This is what Group Discussion Boards are for!!!!
That's a good idea with the DuPont gift shop! I'll have to keep that in mind! Right now it's just me and a friend doing this, and we're swamped getting more designs completed to expand to a place that can encompass a wide range of disabilities.
I loved Dupont, and miss it so much. I loved the color "modules", and for the LONGEST time I wanted to grow up to be one of the people who did the casts for all the kids----- those guys were ARTISTS!
Nice to talk to a ex-dopunter.. Whenever I start talking about missing a hospital most people think I am nuts..I try to tell people it was cool with a boweling alley and a pool and when I was in rehahb I could pretty much do whatever I wanted as long as I showed up for therapy when I was schelduled... It was the only time I could really roam around and go get candy and soda whenever I wanted. Since at home I couldn't just get on my bike and ride to 711 like all the other kids in my town,
For the longest time I wanted to be head of child life when I grew up...
Hey you don't have to take up on this but if you want help with the business side of your T-shirt business we shouldd talk, I have a BS in Business admin and some contacts that could help you.
BMWgirl: For the longest time I wanted to be head of child life when I grew up...
I'm not an ex-duponter, but I am going to be the head of child life somewhere someday. I'm in school now and that's my degree. Family Studies & Community Development w/a concentration in child life. I think hospitals are fun. Even some PWDs that I know think I'm nuts,
Cool beans! Though, I must say...
There's a difference between "child life" and "Child Life".......
"Child Life" is ONLY at DuPont......and it is a magical land of happiness...and stuffed animals.
I think you should definitely apply.
I think hosptials are fun too. I never was admitted as a child but did go to work with my dad at different hospitals growing up and they were always some of my favorite places. I love working in a children's hosptial now.
Our child life is good but we don't have NEARLY enough people in the department yet. I'm forever putting in child life "consults" for my patients if they are stuck in their rooms or bored out of their minds.
Nightengale:Our child life is good but we don't have NEARLY enough people in the department yet. I'm forever putting in child life "consults" for my patients if they are stuck in their rooms or bored out of their minds.
I don't know of one hospital that has enough CCLS on staff. We're certified, not liscenced, so we can't bill for our services. Our salaries come strictly out of the operating budget, so we are always the first to get cut. That is unfortunate, as we have the power to help so many. Our scope of practice is larger then most realize. Siblings of NICU babies, children of seriously ill adults... We don't just live in peds. We do so much...
Sorry I hijacked the thread.
By my last admission at the age of 16 I wasn't a fan of Child Life. I was depressed and wanted to be left alone to watch Geraldo in my room. I didn't want any parts of any of it, it was for kids, I was an adult, in my mind. My PT who was always in my corner tried to get me to volunteer in the playroom to put it on my college aplications. She was like there could be something positive to come out of this crappy situation. Now I see that was a good idea but at the time-nope, just leave me alone.
I think they need to do more for teens. But when I was three, man I thought that playroom was the happiest place on earth. I'd call it (Dupont) the playroom and Ice cream treat place when I was in pre-school..
It's cool that your going to school for that. By 15 I was worried that I'd never find a Play therapy job so I forgot about it. I majoref in business-I still can't find a job! So maybe I should have listened to my inner 12 y/o.:)
HI MY NAME IS SHERRY lilkitten303 I TO HAVE the same problem I'm living in Denver Col. and have had no success at finding a doctor that has any idea how to treat adult CP.the only place i know that has good doctors for cp is SAN DIEGO CALIF where i grew up and i don't want to move back with my mom even though i love her I'm 52 and i just can't picture living with my mom have ya tried the easter seals or united cerebral palsy foundation good luck in your search for a doctor sherry
Hi Fran I have CP and am an adult. If you manage to find a doctor that specialises in adults with CP you have vertually achieved the impossible. I enquired for such a doctor here in the UK and was told quite frankly they do not exist - period. I was given the option of going over to Poland but not to see a specialist but to take part in a programme for CPs that had been developed in Poland.
I am not surprised you are having problems because CPs who walk are not suppose to be still walking after 21. I am still walking 'just' and I am 52. I am also not surprised that the CP thread holds the most postings. That's probably becasue CP is the most common disability in the world apparently. In the UK as far as disabilities go, CP is supposedly extremely high amongst the population.
It would be interesting to see if this is true and if it is, more the reason for the need for doctors that specialise in adults with CP
Keep us posted Fran on your mission.
