12 year old daughter with RSD
 

Hi my name is Dana. My 12 year old daughter was diagnosed with RSD. Her's is currently in her right foot and knee. She has been on crutches since March. Her knee is almost frozen in place even with PT her range of motion isn't great. She's on Lyrica, and just increased to an adult dosage. The weekend she started Lyrica her appendix went crazy and she had that removed in May due to appendicitis. We live in the Midwest and there aren't really many peds clinics here for pain management. I am so lost on where to go and what to do or expect. I would just love to see my daughter walk again, but her pain is way to bad. She had a triple phase bone scan and has decrease upflow of blood in her foot and knee. So she stays very discolored when she gets up. Swelling is another major problem. Any help or any one with a child that Chloe could talk too would be great! Thanks,

Dana

Dana,

Welcome to the group. There are many families on here with children, whom I hope will guide you in the right way. I have seen it said many times you definetly should find a peds specialist. there are lots of options for children with rsd.
Mirror Therapy, etc. look around the forum and feel free to ask questions.

Welcome
 

Hi Dana and welcome to our group although sorry that your daughter's illness brings you here. Be assured that there is a lot of support for you and your daughter on this site and lots of good resources and information.

The RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) has a special page for youth with crps/rds. Included in resources is a link to a group for teens to a buddy system. http://www.rsds.org/Youth.html

Where in the Midwest do you live? I know of a teenager w/rsd who was successfully treated at the Children's Hospital of Wisconsin. Her mother was quite pleased with the success. The daughter had hurt her foot during ballet and after 1.5 yrs. she is now able to slowly return to ballet.

With an optimistic note, it's the youth w/rsd who are most successfully treated. If I recall correctly it's because of their hormones.

Keep advocating for your daughter and wishing you much success.

Hi Dana,

My daughter was also diagnosed with RSD at the age of 12 years old. She is now 19 years old. I will say that she has gone through many procedures and medications. She went through the Cleveland Clinic pain management for children two times. I am going to tell you that there are several facebook pages that cater more towards families and children with RSD. Do you have a facebook page? I find a lot of help on there. I will be happy to help in any way that I can. My daughter is doing well after all of these years. I know of many families right now with children your daughters age that are on these pages. I will check back tomorrow and if you want to send me your name in a private message I will find you on facebook and send you the links. This site is also a great resource and for many years has helped me through some tough times and for that I am so grateful.

There is hope, so you need to stay on top of this and things will look worse before you see that light at the end of the tunnel. I promise it is there somewhere in the distance. So keep your chin up.

Sandy

Hi Sandy,

I do have a facebook page. I am not sure yet how to work this site out. But I would love to see some of the links for facebook. We live in Indiana and I am not having much luck finding doctors to treat her. We see an adult neurologist currently. She was actually diagnosed by a vascular doctor. I will have to do some research, because I do think she needs a very extensive rehab program. She is only at 5% in movement at the knee. We do pool therapy twice a week. Any information would be great. I know Chloe feel's so alone. Thanks!

Dana

Dana

Go to the search bar on Face book and put in http://www.facebook.com/groups/171040539621883/

If that doesn't work it is RSD PaSandyrents Yahoo Group, there is also one called RSD united. This one is all ages. But, the parent group is a really good start. Once on there you will see many other.

Here is another group that can help others, some parents are on here and others have RSD.

Hope this helps.

http://www.facebook.com/groups/Rsdladies/

Hi. (:

My name is Sara, and I have CRPS in my right leg too. I'm 15, I was 11 when I was diagnosed.

I go to UVA, and while I know that's really far away, it's a great place to go to. I have other problems too, but still. My Pain Doctor is amazing. Her name is Dr. Hammill-Ruth. She's done a lot for me.
Does your daughter have a TENS Unit? My doctor gave me one and it has done wonders for my leg.

And if you daughter needs someone to talk to, you can message me. I would gladly give her my e-mail. I kinda know how she feels, and sometimes it's nice to have someone who actually understands to talk to. (:

Hello Sandy- I am wondering how you liked the Cleveland clinic's program. Do you think it helped your daughter long-term?

Lori

Hi Lori,

Yes, I feel that even after four years, my daughter still uses the techniques that they taught her. I will be honest it is a brutal program, they have a hard time in the beginning,, but they stick it out and learn so many physical, behavorial and emotional ways to live their lives with this horrible disease. My daughter went back and did the program twice. They have other kids there that understand what they are going through. My daughter met her best friend there. They live very far apart, but they are best friends. They are planning on going to college together. Give it a shot. If your insurance company denies it, keep on pushing and pushing, they will eventually approve. They have to say that it is medically necessary. Like I said in a previous post you can PM me for any information.

Sandy