Hello,

My 8-year old was recently diagnosed with RSD. We are in the Phila, PA area. Currently, I'm exploring Childrens Hospital of Phila, DuPont and the program near Boston. I've talked with someone currently in the CT Childrens Hospital program. Any experience with any of these pediatric pain programs? or others - Chicago, Cleveland, Duke? Will travel to the place that best suits her needs and can treat her soonest. She's receiving outpatient PT, counseling and occasional chiropractic adjustments while we wait to get in a program. Thank you.

Hello and Welcome to Neurotalk, The-Momma! You will meet many great people here who i'm sure will try and help you in anyway they possibly can!!

I am so very sorry to hear about everything that your daughter is going through at the moment!! I can't imagine how hard it must be to deal with RSD at such a young age when you don't really no what is going on.

I was 12 years old when I developed RSD and that was bad enough but I can't imagine having it from being 8. My RSD started in my left leg after an ankle sprain in March 2007 and has since spread to both of my arms.

I'm not in the US (i'm in England) however, I have been on one of the Paediatric Physical Therapy Programs like you mentioned for your daughter at Great Ormond Street Childrens Hospital in London.

The first program that I attended in July of last year helped me. It didn't get rid of my pain at all however before I went on the program, I was completely wheelchair bound as I had lost all co-ordination in my legs and the PTs there got me walking for the first time in over 13 months. I can only walk really short distances without having to use crutches or my wheelchair but even that is better than not being able to walk at all.

My PTs said that I didn't make as much progress as they wanted on the program so told me to return back about 6 weeks later for a further 2 weeks PT.

The second PT program didn't help me at all and I think it made me a little worse if anything. The leading PT wasn't there so it was left to all of the senior PTs who didn't know that much about RSD and the additional complications of Dystonia and Myoclonius that I have.

My PTs want me to go back onto the program again however i'm not sure when that will be at the moment. They want to try and get the RSD and Dystonia in my leg under control more.

I'm not going to lie to you and say that the program was easy, it wasn't at all and was probably one of the hardest and most painfuliest things I have ever had to do and I remember screaming through it and wanting to go home BUT it was worth it a little!! I'm no where near better and still have excrutiating pain but I couldn't thank the staff there enough for enabling me to walk again - even if it is just short distances!

When I was on the program, there was lots of other kids there with different chronic pain conditions. I think that really helped as they helped us stay strong through some of the really tough times and could relate to some of what we were going through. We all helped eachother.

I've heard from lots of kids who have been onto intense PT programs and had lots of success. My PTs told me that kids have better success rates than adults because they don't give in as easily - I guess that is true with us younger kids/teens as our lives have only just begun and we want to try and live it the best we can. Like everything with RSD though, everyone is different and no two people will react the same unfortunately so bear that in mind.
If you have any questions about the program, please feel free to ask me - i'd be more than happy to help you if I could!

My heart truly goes out to you and your daughter for dealing with all of this. I can't imagine how scared your daughter must be right now, dealing with such awful pain at a young age!

Please send your daughter my love and know that i'm here if either of you ever want to talk!

Alison.

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Hi,

My daughter has been to the Cleveland Clinic Pain Rehabilitation Program two times. They were amazing. She learned how to cope with RSD, what stage is your child in? I would absolutely recommend the Cleveland Clinic, it is a lot easier to get into. Not too much of a waiting list. The PT/OT and the staff were amazing and wonderful very caring especially Dr. Banez, the Psychologist in charge of the program. My daughter loved the program, I know that sounds silly, but when we left she said "Mom I have my life back." Unfortunately her RSD is back in full force, she is undergoing the Three day Ketamine Infusions next week with Dr. Anthony Kirkpatrick in Tampa, Florida. Definitely give the Cleveland Clinic a try, it was a great coping tool, your child is young enough to hopefully make a full recovery, if you need additional information I can post the phone number and contact for you. Good luck and don't wait too long.





QUOTE=the-momma;536563]Hello,

My 8-year old was recently diagnosed with RSD. We are in the Phila, PA area. Currently, I'm exploring Childrens Hospital of Phila, DuPont and the program near Boston. I've talked with someone currently in the CT Childrens Hospital program. Any experience with any of these pediatric pain programs? or others - Chicago, Cleveland, Duke? Will travel to the place that best suits her needs and can treat her soonest. She's receiving outpatient PT, counseling and occasional chiropractic adjustments while we wait to get in a program. Thank you.[/QUOTE]

I am an adult but did part of the Cleveland Clinic day program for pain. I know a young teen who did there pain program for kids and also the one I think at Rush in Chicago. I only made it through 4 days of the pain program due to my pain being so high. It was at the start of my rsd and so I was sent to an anestesolgist there. Actually 2 of them Dr Stanton Hicks who also the young teen I stated sees and got her scs with. I have mixed feelings on the pain program. I see them having a place but did not feel it was individualized at all. Also how they don't allow meds other then neurontin for ex but no pain meds. I am not saying to or not to go to a program like this just my thoughts. I also was not happy with my care at Cleveland and I could almost tell you the intervential procedure they would suggest to someone with rsd though it may not even fit them. It may be different for kids though. I too have read being younger your child does have better recovery. Is she on any meds? I am concerned about these adjustments? How is she doing with those? I can't imagine how hard this is as a mom for you with an 8 year old. I know the toll this takes for my mom and she is my hope and strength through this and I am 30. Hang in there

Dr. Sherry In Children's Hospital Is the best youth RSD doctor there is. He originally was out in the state of Oregon had started his program out there and came over on the east side. For any youth with rsd i would strongly recommend Dr. Sherry I have been to his program and seen many children cured or into a almost permanent remission. Most only have to go through his program once and never have problems again. In rare cases a second time is needed. Hes gonna be your best bet. Best wishes to you and your daughter.

i am so sorry that your daughter is goin through this. i also have daughters and i have RSD and i couldnt imagine !!.. i was 16 when i got RSD.. i went to Rush st lukes in chicago and seen dr tim lubenow. i would reccomend him highly..

where is your daughters RSD and how long has she had it ?

carrie

My daughter was diagnosed with RSD 2 years ago at the age of 12. She has been treated at CT. Children's with outpatient and a 2 week inpatient program. She has done well, but continues to have intermittent flare ups. CT Children's is very caring. The inpatient program consists of PT,OT, psych, child life (fun time). It is a long day, but the results are worth it. I wish you and your family the best.