lmkmip67 Posted December 6, 2011 Report Share Posted December 6, 2011 It is time to move on to plan B. We have done 4 IVIGs with Dr. B and Ian is worse than he ever had been. His OCD is starting to cripple him big time. There haven't been any tics. But the OCD is worse than I have ever seen it. There are no co-infections. Lyme was all negative. he should be a typical PANDAS kid. But antibiotics do nothing. IVIG has done nothing, almost seems to make him worse. I don't know what to do next. He is now moving into even numbers ok, not odd. Saying things twice, walking up and down stairs so many times, etc. He is crying tonight because he can't take it anymore. He says his OCD is driving him crazy. He is only 8, no kid should have to live this way. We have tried this route, but it is not working. Steroids seemed to help at first. We haven't done them lately except the dose with the IVIG. He is on azythromycin again, was before. We have tried 3 or 4 different antibiotics. Clearly this is not helping him. The tics were here earlier in the year but seem to have subsided. The OCD is 100 times worse. I am going to make an appointment with a neurologist because the PANDAS route is not working for us. I am not giving up on it, but I don't see the point in putting him through 2 days of needles and treatments when it does nothing. I should have seen SOME improvement from it by now. I may make an appointment with an LLMD as well, but not sure how good that will be since there is no issue with Lyme according to the tests.....we did the whole IGENEX work up. Sorry to whine, I just don't know what to do and I am so frustrated. Lisa Link to comment Share on other sites More sharing options...
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!Register a new account
Already have an account? Sign in here.Sign In Now