rsd in children
 

hi im new to this site, i live in u.k. wanted to know if anybody else was in uk. looking for inforemation about rsd in children,
thankyou x

Hi Sharon,

I am an adult living in the UK, and I've had CRPS for nearly two years. I've read a lot about CRPS, and the one thing I particularly remember reading is that the outlook for children tends to be better than for adults, particularly if their treatment is started quickly and they are encouraged to keep active and positive about their future. I suggest you read as much as you can, and be prepared for the fact that you need to learn as much as you are able, because a scary number of doctors and physios really don't know much about CRPS, and you can be lead down the wrong path very easily if you don't know your stuff. Is it you or your child that you're asking for?

There are some very good docs out there, I'm just saying that I've met far more who didn't know the condition, and too many of them tried to pretend they did! Educating yourself is your best weapon to deal with this. There are some very good web sites and a lot of smaller bizarre ones. Stick to the bigger, more public sites, and you will find from reading that you soon pick up on what sites can be trusted. Check on the dates as well, CRPS thinking changes rapidly, and many older ideas have been rejected in recent years.

Good luck, and I hope everything goes well.

Bram.

Kids do tend to do better than adults. My 14 y/o has had it since she was 12 and has been through 2 pain rehab programs (Mayo in MN and Cleveland). They have both been helpful, but she still struggles. Having gone through the 2 programs, we have met quite a few other kids dealing w/ CRPS and all got benefit (to varying degrees) from the programs, which focus on aggressive physical therapy and coping skills. There is reason to hope.

The RSDSA has a section devoted to children w/ CRPS: http://www.rsds.org/Youth.html

Here is a list of pediatric pain management programs by state: http://www.americanpainsociety.org/u...d-09-14-12.pdf

There are also a fair number of threads on this group that talk about children. Here are some (not all):

http://neurotalk.psychcentral.com/sh...ight=pediatric
http://neurotalk.psychcentral.com/sh...ight=pediatric
http://neurotalk.psychcentral.com/sh...ight=pediatric
http://neurotalk.psychcentral.com/sh...ight=pediatric
http://neurotalk.psychcentral.com/sh...ight=pediatric

You can find more using the Search function and limiting it to this discussion group.

Good luck!

thankyou .....
 

thankyou for your replys, its my grandaughter who is 12yrs old, we also had the docters who didnt have a clue what it was, we even had one a&e docter said it was cramp !!!!!.. we spent a year going round and round getting no where, till we saw one dr in london who said yep she got r.s.d. go home she will be fine its just a one off, that was last year and now its back again, doesnt help that she also has e.d.s. which ia all so something not many docters know about..not got much faith left in the medical services so wanted to try to find other kids with the same problems.

thankyou for your help and good advice xxx

RSD in children
 

Hi Sharon,

I live in USA/California. My 13 year old daughter has RSD and has had it for over 2 years now. 15 hospitalizations, multiple treatments, so many medications to control the pain. Nothing works except Ketamine infusions. If you could find a program that does low dose ketamine with intense physical and occupational therapy that is your best bet. It will never go away. It will always have the chance of coming back. Any trauma/illness can trigger it. We have been through the ringer with all the doctors, treatments and taking her all over the state of CA. I wish you luck. If you need anything or want to chat just holler!!!~Kelly

hi kelly, thankyou hun for your advice, its nice to know there is someone to chat to who is going hro the same thing,... we are trying to stay as possative as we can and we have a game of the r.s.d. is the alien who wants to stop emma doing the things she wants and the pain is him loseing the battle lol it seems to help emma deal with it better, would you know if there is a childrens site where kids can talk to other kids with r.s.d ??. i wish you well hun xx