Hello all,

New on here come on searching for some solutions to my daughters misery... she was diagnosed with CRPS in June after a crush injury to her ankle in January. She has not walked a step since Jan and although she is receiving Physio, occupational therapy and counseling along with lots of pain relief her symptoms never go below a "5" pain level. I feel hopeless and don't know what to do - what can anyone advice on treatment that has worked for you or your family - especially children?

Many thanks

Has she had warm water PT?

Children are the most likely to have spontaneous remission! Have they given her any blocks yet?

Dear Elisa/Rachel -

Lit Love and Kathy makes good points. And taking theirs a step further, it is better to have this as a child as horrible as that sounds. A number of treatments which provide adults only temporary relief have put children into permanent remission, in addition to those who reached ed spontaneously.

There are a number of very good pediatric centers around the country/world that have done remarkable work with CRPS. If you tell us where you're located, there are a number of parents of kids with CRPS in the forum who should be able to offer some very specific suggestions.

Mike

Hi,
My 11 yr old daughter was diagnosed with CRPS last week by her PT. She took a shot to her upper right leg about 5mths ago playing soccer in PE. We took her to the ER & had x-rays done and it showed no break. After a week she felt fine and went back to normal activity. She is very active in swimming, track & softball. At track last week she tweaked her ankle. Since then she has pain to the touch in her lower leg & ankle, her leg is cool to the touch and she is miserable. Does anyone know of a program for CRPS in Portland OR or Vancouver WA?

We could use all the help & guidance anyone can provide......Thank you,
MOOK

Mook. from what i have discovered . one of your childs sports has shown to be effective in treatment. swimming. in fact I'm getting ready to try it myself. otherwise to address the original post. every-one has offered very good advice. to add though .speak with your child educate her as best you can with what you are learning. share this amongst your family and get as many involved in her treatment as possible. try to keep her spirits up and in between treatments try not to stress out, as she will most likely follow cue, and stress is bad for this beast. music, art, anything that is a solid distraction will help abode pain even minutely. and as we can attest every little bit does count. I added this as it is the one thing that many forget about while getting frustrated with unknowledgable dr,s and insurance issues and so many treatments and procedures to sift through. also make sure she feels ok with telling you exactly how she feels and that she doesn't try to hide her pain. a lot of us tend to do that when dealing with loved ones to try to make THEM more comfortable. all of this with the very sound information given before be should yield pleasant results. and I and I'm sure all of us will pray. no child should have to go through life like this. not saying any one should. good luck and please send her our best wishes

Let me say as a mother that it is very difficult to see your child suffer.. I feel for your pain and hers.. Find a peaceful place where you can both find things to be grateful for. It helps.

I am so sorry for you and your daughters having to deal with rsd. For adults it is miserable but for poor little ones...I can't even imagine what they go through being so young and not understanding how it all works. Good news is that many children for whatever reason are able to get their rsd into remission with lots of PT. My advice would be to find a pediatric hospital that has a program for rsd and get her there quickly! It will be tough for her as it has been I am sure but with the right PT they can get her moving her ankle/foot again. My initial site of trauma was my rt foot and I did not walk on it or could not use it for a year and a half. I saw a chiropractor and she had me walking on it within a month of her initial treatment. But get her to a rsd peds dr for PT asap! There are many other treatments out there and it is a hit and miss type thing but for children time is of essence. If the hospital wants you to wait push them and tell them how bad she is and insist on getting in there asap. Best of luck to you and let us know if you need any help or have any questions.
kathy d

My daughter is 12 and was diagnosed with RSd in April. Started in her right ankle and spread to both legs from the knee down and the right shoulder and arm. She missed school from April on and was unable to do anything for months. She is an avid athlete playing all sports and we went to Boston Childrens Hospital. Place was amazing. The staff and doctors were great and she was there for 3 weeks. She missed the first week of school, but she is now back to school and playing soccer. I was recommended to go to Boston Childrens Hospital or ChOPS in Philadelphia by 2 families who both had excellent results as did my daughter. If you need any info, I would be happy to help as the first few weeks we didn't know what to do. The pain was a constant 9 - 10 and she was on medications and not sleeping. After the first week at Boston, she was off all meds and is sleeping wll also.

You "must" ensure that you are working with professionals that are experienced in CRPS, as this condition is widely misunderstood, even among professionals.

The first question to ask any doctor, therapist, etc. is how many people they have treated with CRPS. Don't be embarrassed to ask; there is a lot at stake here. If they have little or no experience, continue to seek more opinions.

The thing that is heavily in your favor is your daughter's age. As many have mentioned, they absolutely have a chance at remission, but time is of the essence and she must be working with the best in the business to give you the best chance at that remission.

Hi,

My daughter was 11 when diagnosed. She did the Cleveland Clinic pain rehabilitation program. It is in Cleveland, Ohio. They say that kids can go into full remission, but I have yet to see it with my daughter she is now 18. But I highly recommend an in hospital pain program. I know of children that have gone into remission. Good luck, if you need to contact info, I will be happy to get it for you.