My daughter is 10 and has CRPS - please advise me?
 

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? :confused:

Many thanks

Has she had warm water PT?

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

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

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

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.

Have any of those with children with RSD tried HBOT?

It helped me even though I tried it 7 or so years post RSD onset. It was most effective on an injury that was only a few years old and was slowly, but continually getting worse. I'm pain free in that area 95% of the time now.

Since HBOT is non-invasive it seems like something that would be worthwhile trying with children especially. :grouphug:

Crush injuries are covered by HBOT. I would absolutely try that first off and then I would move on to ketamine as early as possible.

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