Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 12-27-2011, 04:35 PM #13
ballerina ballerina is offline
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Join Date: Feb 2011
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ballerina ballerina is offline
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Join Date: Feb 2011
Posts: 393
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Quote:
Originally Posted by accox4 View Post
Thank you everyone for your responses and help. I know SCS seems very extreme for a young 13-yo, but I am so desperate to find some relief for my daughter. She has since had yet another nerve block and they just aren't working. It has finally effected her psychological state and she is really struggling right now with the thought of having to live with pain for the rest of her life with seemingly no relief. We are also trying a compounding cream (combination of 5 medications), which does not seem to be helping after 4 days use; we were told she should feel some relief after the first day or so, but nothing. My always smiling, joker of a daughter is now withdrawn and not-so smiley as she use to be. Just kills me to see her like this, especially when there is nothing I can do to relieve her pain, not even a little bit.
I am aware of some of the oral medication options, I am, however, afraid to start her on these, as a lot of these are so addictive and being so young, has a longer period of time to need to increase doses as time goes by and her body becomes resistant.
She doesn't remember life without pain in her hand, as she got the original (painful) infection when she 8 and has lived with pain in her hand ever since. Most of the time she doesn't limit her activities because of pain, she has just learned to live through it. However, there have been periods of time, months at a time, where she is unable to use her hand due to pain and due to her psychological frame of mind right now, I want to get some solution, any solution before she is debilitated again.
She did go through an outpatient day treatment program at St. Jude's with PT & OT, which helped a little.
Thanks again everyone for your responses and your help. We see her doc in a couple weeks and we will be talking about some other options.
Dear Accox4,

The words "Spinal Cord Stimulator" and "Desperate" should never be used in the same sentence. The combination of these words is what has led to thousands upon thousands of CRPS patients being permanently disabled. You mention that your young daughter does not usually limit her activities. There is a very real possibility that a SCS could lead to a lifetime of limited activity and CRPS spread.

Please explore more state of the art, non-invasive treatments for you child. tDCS has provided a life long solution for Chronic pain patients, particularly those with CRPS. It has been quite effective with intractable CRPS and is quite safe.

You can never go back if your daughter's CRPS is ignited to full body and the odds are with that happening. Please use every ounce of your advocacy skills to examine the risks. My suggestion is to make the physicians who install them and the companies who manufacture them last on you list, rather than first.

My prayers are with your family.
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