Stephanie
First - you are getting some incomplete information here - as someone who lives with and studies RSD extensively I hope I can help! Your first priority is a Pain Management Doctor. Second is to make sure your child keeps the affected areas moving as much as she is able to tolerate, don't force her to endure long sessions - just get her to gently move her leg/arm throughout the day to maintain range of motion. While there is some debate - many say that ice is the WORST thing you can do for RSD. A warm bath or pool can be very helpful in facilitating movement - only when she is being adequately treated should they try contrast baths. Before she hits the 6 month mark your daughter should be getting a series of Sympathetic Blocks. This is essentially a spinal injection and she can be sedated for it. It is painful but it is very effective if tried early and often. Normally the procedure is done weekly initially and then slowly spaced out. If it works (meaning the pain is sympathetically mediated) she will eventually need it less and less and it often results in pain free living after a long battle but ONLY if it is treated quickly. Please be careful with epidurals - there are new studies that say the use of these in Pediatric RSD can result in a spread or worsening of the childs condition. This does not happen to every patient - but make sure you get multiple opinions from people who are knowledgable before going this route. In addition to the blocks - your child should be doing Physical Therapy - but don't assume that a therapist who has heard of it knows what they are doing - if PT is too aggressive it can make things worse. Interview the people working with your child and make sure they are continuing their education and keeping up with the huge changes in RSD research that has happened lately. Recently NIH (National Institute Health) concluded that RSD also known as Complex Regional Pain Syndrome (there is debate in some circles as to whether these are the same, but most accept that they are) is a problem with the Autonomic Nervous System, Central Nervous System, and the Immune system. What it boils down to is - the sooner you get treatment - the better the prognosis. Also - with RSD pain feeds off of pain - a cycle which needs to be broken in order to prevent the disorder from worsening. Do not let the doctors tell you that your child should stay away from pain medications. When used to treat pain properly there is less than a 1% chance of addiction. Chemical dependence may be an issue - but this simply means that when it is no longer needed that your child will be slowly tapered off of the medications. There are also some great non-narcotic medications like Ultram that you can start out with. Ask your doctor about anti-epileptics, tricyclic antidepressants (for pain control and help with sleep), anti-inflammatories, lidocaine (anesthetic) patches and creams,sympathetic blockades, anti-spastic drugs (like baclofen). A key component in treating RSD is getting adequate sleep - pain is usually less severe and you are more able to deal with it when you are sleeping enough. Swimming is a great activity for RSD patients, as is gardening, and any gentle play that lets the child move while she is distracted from pain by an activity. With your doctors approval yoga can be helpful - there are classes for people with disabilities. Another great help is the YMCA/YWCA many of them have pool therapy for Multiple Sclerosis patients that seems to help those with RSD and other Chronic Pain disorders. Make sure she stays socially active and included in family activities - one of the biggest dangers in patients with chronic pain is depression. Depression also makes the pain seem worse. Please get your daughter to a good pain management doctor as well as a psychiatrist and psychologist that can help her learn coping mechanisms. Other specialties that may be able to help are Physical Medicine (Physiatry), Neurologists, and Physical Therapists. Last, proceed with getting your daughter the best treatment possible for RSD, but you may want to request more tests to ensure that she actually has it. There are a number of disorders that are often misdiagnosed as RSD because they are similar or the doctor has simply run out of ideas. A neurological work-up is important. Please feel free to email me with questions or if you just need to talk to someone who knows what you're going through - Stay Strong!