Rita, thank you for keeping us up-to-date with how Reed is doing - I really appreciate it!! I hope things get better for both you and Reed soon and I am keeping you in my thoughts and prayers.

I agree with what Ada said about the meds, I also feel that in some cases they can make things worse. A few months ago, I was taking 10 meds a day and they weren't helping me at all, the only thing they were doing were causing me to have some pretty nasty side-effects.

After speaking to my PM Doctor, he eventually agreed to wean me off all of my meds gradually one by one and see how I felt. My pain is an 8 and a half on the pain scale constantly but because I have come off the meds, I am not as drowsey as I was when I was on them so it has enabled me to do a few more things.

This might not be the case in Reed's case but I honestly feel that if the meds aren't helping, there is no point in being on them and sometimes they just make you worse instead of better. If the meds are working for Reed and they aren't making him all drugged up and drowsey, that is great! The only med I have found that works for me is Ketamine but I only take it on my really bad days as it is too dangerous for me due to my age (13).

I really hope things get better for you both and am keeping you in my thoughts and prayers and sending Reed many, pain-free hugs!

Alison.