Pediatric Rehab
 

Hi,

I hope you are all doing well and that today is a little more bearable than others. As you might know, I'm 18 years old and live in New York with CRPS in my left leg. I had a spinal cord stimulator implanted permanently three weeks ago and have seen a 25% decrease in pain, from a 9 to a 7. The main thing for has been that I am now able to bear weight without my limb shaking furiously. My doctor and I have come to the conclusion that I need intensive rehab since college for me starts in 4 months and I want to be better mobility wise then. I am looking for programs that are familiar with this condition and can help do that, preferably in an outpatient setting. I saw a few day programs but am not eligible for them since I graduated high school. I also understand that I might have to go inpatient, which is not ideal but may be necessary at this point. Traditional therapy once or twice a week has done nothing for me and something has to change. I have heard good positive reviews for Blythedale, the Children's Hospital of Philadelphia and Boston's Children. I am aware of Children's Specialized in New Jersey and have the PDF from the American Pain Society that shows a few others. I'd like to get your opinion on all this and would appreciate it if you could spend a few minutes researching for me. I want to preferably stay near the Northeast, not more than three hours away by car. I had an inpatient experience at Rusk Institute a couple years ago and did not like it there. Thank you in advance for trying to help!

I know the forum has been slow lately, but anyone?

I'm sorry that I don't have any advice for you here and hope you are able to find a program that works for you.

I personally found in home PT to be very valuable for me but the critical piece for success was ME doing the exercises EVERY DAY. That's why I liked the in home PT...everything we did COULD be done at home. It took almost a year to regain full mobility and function (with the use of a walker)...but after almost a year in a wheelchair that is to be expected. I'm including in that year the time needed to rebuild my endurance which took a while even after I got the function back.

Only mentioning this as perhaps another alternative if you cannot find a program like you are looking for. I made a list of all my exercises and I checked them off every day, twice a day, as I completed them. This helped keep me focused on my recovery and regaining that function I so desperately wanted.

Are you only looking for pediatric rehab?
That might be limiting your options, wouldn't adult therapy/rehab fit also?

Anyone else think they can help? I seem to be running out of options.

I do have one thing that I can suggest. I do not know if it will help at all or not, but it is better than nothing. Wherever you are planning on going to school, many of the larger schools, especially those with a medical or even a pre-med program, often will have a training facility, and many students and instructors looking for someone to learn more from. Chances are, they will not have anyone that knows much, if anything at all about CRPS, but students are eager to learn as are some instructors. Try to see if your school has any type facility and program like this. It may be a PT program, a sports medicine program, or any number of medical rehabilitation programs.

You could also try contacting one of the physical trainers for one of the sports teams the school may have. I realize that not all schools have athletic programs, but the ones that do, the trainers are usually willing to work with students even outside of the program that they are involved with.

Just a few thoughts to share. I hope they help.

This might be a little too far for you but in Pittsburgh there is something called the Children's Institute. It is a facility that offers inpatient and outpatient services. There are only 4 other facilities like this in the country.

They offer a program called pain rehabilitation that focuses on conditions like CRPS. You can do this as an inpatient and the program is usually two to four weeks which gives you plenty of time to complete it and be ready for college. They have a variety of different types of therapists including your traditional physical and occupational therapists, but they also have pain psychologists, music therapists, and a few more. They also have what they call "educational support" which I believe will be able to offer suggestions on adapting your classes and studying habits.

Honestly I wish they offered this for adults because I would love something like this. I do not see anything about an age cutoff but I'm sure one phone call can answer that.

CHOP (Children's Hospital of Philadelphia) has such an amazing reputation so I can imagine any program offered there would be an excellent choice. One of my sister's friends is a nursing director there and has nothing but positive things to say about the hospital. But there program has a cutoff age of 18 so I'm not sure if you would qualify.

Unfortunately you are in that in between age where you aren't a pediatric patient but you aren't really an adult patient. Whichever option you choose I wish you the best of luck. College can be a lot of fun and I hope you get to enjoy it and be pain free!