Welcome,

I too am very sorry that your family is going through this. It is tragic and debilitating when something of this magnitude happens to a child. Hard too when there is insufficient compassion from providers. You will find support here and I encourage you to never give up hope.

But I must challenge you on something. You said ortho referred you to surgery and you canceled the appointment? Ortho must have had some reason for making the referral. Is the doctor thinking there is some treatable cause that needs to be addressed? Regardless of the quality of your own research it doesn't substitute for a clinical exam by the right practitioner, possibly a plastics person with nerve training. What did the CRPS result from? If there is any remote chance of finding and treating the problem chase it down! Sometimes nerve entrapment or other problems resemble CRPS or cause CRPS and can potentially be ameliorated.

Please post a little detail if you don't mind. There may yet be some Workup or specialist that may be of utility. Never, never, never give up!

Sending Helaing Love, Littlepaw