Hi there. I suspect we're both alums of the same neurology department, a couple of blocks north of Philadelphia City Hall. I understand the burden you are carrying, having once carried it myself. It started with being told that I would be cured. (The success rate on the coma treatment was pretty amazing at the start.) It ended, for all intents and purposes, 8 months later, with tickets the Germany already in hand, when the German doctors disqualified me on the basis of pre-existing and well controled glaucoma, something that I had disclosed in my initial admission papers, but went apparently unnoticed. My wife and I can tell you were in the room were both were when the email came through.

But move on we do. And there are a host of stratagies. The central one for me has been whereever possible, to cultivate a relationship of non-resistance with the pain. Which is to say, to get to know it well enough that can become comfortable with it passing through you. My meditation teacher, Shinzen Young, likes to say that Suffering = Pain X Resistance. There's some interesting other stuff that can be done with analyzing pain in meditation, so that, at least to a certain extent, you can actually find some release in the appreciation of its nuance. But I would largely be going on off track. The point I do want to make is that, your current frustration notwithstanding, you come across as a pretty level headed person, not prone to catastrophizing situations as a whole, which is great.

Still, I know how hard it is being a parent, when what you can do with/for them is limited by your RSD.

That said, just because ketamine is apparently no longer an option for you, you should know that there are other options on the table including an as yet experimental technique that's currently being developed by Dr. Michael Stanton-Hicks and others at the Cleveland Clinic, involving the use of intrathecal "high-dose" ziconotide (Prialt), which in early tests has looked pretty good.

If you're interested, you might want to look at "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in a Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Management 2006;6:509-510, FREE FULL TEXT (and a couple of amazing photos) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf. This was followed more recently by "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Practioner 2009 Jul-Aug;9(4):296-303:

ABSTRACT
Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

If you would have any interest in pursuing this, it's my understanding from speaking with someone in the Cleveland Clinic's Pain Management Department, that your records would have to be forwarded to Dr. Stanton-Hicks, who has now taken senior status and agrees sees only CRPS patients after he has reviewed their records. More information can be obtained through his secretary, who can be reached in the Pain Management Department at (216) 444-7246. And FYI, while I understand that his bedside manner can be a little curt, he's also the the guy to see for this particular treatment, until it enters more widespread trials. His secretary may be able to give you more information on that, I don't know.

I guess the take home point is - as others have said - don't give up. Nor should you (entirely) despair. There will always be something new around the corner, and sooner or later, you will find a treatment that works for you. Nevertheless, in the here and now, you are dealing with terrible disappointment. But to the extent you can distinguish between that and accepting as a fact that your situation is truly helpless, you are much better off.

Mike