Just not sure what to do next...

[lmkmip67]

This may seem like a dumb question to ask but, are you sure your child has PANDAS?

 

Well, he had a strep infection in March of '10 and started a vocal tic about two weeks later that never went away. It progressed to about 4 more tics over the summer and bad OCD, ODD, etc. He did show some improvement initially on antibiotics, and was amazing on a steroid taper. But just not enough improvement has been seen via antibiotics and IVIG. His tics are gone, however. Just the OCD seems to get worse. It has stabilized this past month, but is not improving either. Does he have PANDAS? I guess I don't have proof, it is a clinical diagnosis. But it sure seems to fit the profile pretty well.

[lmkmip67]

We were also in CT for my son's 4th ivig. We were in the room next to your hubby and son, and I got to talk to your husband briefly. I don't have a lot of specific advice to offer, because there are so many unique factors with each case. I can only say that we are seeing improvements, so we are continuing on with treatment. The alternatives (with neuro/psych) haven't really appealed to me, and my son definately has an infectious component. I just want to encourage you to keep on digging!! It is hard to trust this process with so many varying outcomes, but like I said, the alternatives don't seem to be solving the problem. I know we will all "get there" eventually. Don't give up!!!

 

Thank you!> I won't ever give up. Just get really confused some day. lol Ian has an infection component too because he flares when exposed to strep and other illnesses. Especially when he gets sick, it is so pronounced how much worse the OCD gets. I hope you continue to see improvement! I hope we see some soon!