Originally Posted by momw/rsdchild

Thanks for the kind words. I have not tried the TENS yet because she is just in so much pain right now. She has an amazing pediatric pain management specialist at Children's Hospital in Dallas so we are going down there tomorrow. Since we moved a couple of months ago to OK it is now a 5 hour drive to get there instead of 30 minutes. That is why I am looking for someone here in OK who can take over her care. Tomorrow they are going to do a ketamine IV infusion to see if that will help her. She has had 4 month long stays in the children's hospital to get indwelling epidurals with ketamine. They work wonders and the last one she had was March 2009 and this is her first pain flare up since then. If the IV doesn't work they will admit and do the epidural. It will be much harder not being local right now though. I am going to ask about the lidocaine cream too because she had the Lidoderm patches that work some but when she pulls them off it just stirs it all up again so it isn't really worth it.

Thanks again and if anyone hears of anyone in OK who treats this please let me know.