My name is Becky, I live in North Dakota, just had a phone consult with Dr. Kovacevic on Wednesday 9-29 regarding my 6 yr dd. About a month ago, she had sudden onset of OCD. My 13 yds had sudden onset of OCD at age 8. Have always been told by psychiatrist that his OCD isn't PANDAS. When dd started a month ago, I started to re-think. Had her ASO titers, etc. done. All normal. Dr. K. still thinks she has it though based on her history, although he thinks it started a year ago. We are going to try the 5 days of prednisone as soon as I can get in touch with her pediatrician to prescribe it. If this works, he recommends IVIG. Ugggh. Don't know if anyone in North Dakota does IVIG and I'm sure its not covered. Interestingly, he was more concerned about 13 yr.old and I gave him a brief history. Son has not had ASO titers, etc. done. He wants them done, but I think they are a waste of time since her showed nothing...and he has been sick for 5 years already. He encouraged me to think about IVIG for him quickly because success goes down after puberty. DS already in puberty...so not sure $14,000 worth of treatments are worth the risk of not working.
Are there any longitudinal studies regarding this? Does it cure their OCD? I have so many questions, and so little time to figure this out (in the case of 13yr old anyway). Anyone know of any clinical trials we can enter to help pay for it?
Lots more questions than answers,
Becky in North Dakota
