Rain Posted November 13, 2011 Report Share Posted November 13, 2011 Hi all, Just thought I'd post an update. We are 11 weeks post HD IVIG. We went with 2.0 g/kg. Doing really well. Not 100%, but happy, doing well in school, joined the basketball team, and can actually do CBT/ERPT, whereas before, those therapies were useless. Background - our son had not-so-sudden onset OCD Oct-Dec of last year. By Dec, it was debilitating (hand washing and cleansing rituals, invisible barriers, unable to enter/exit rooms, unable to wear many clothes, etc. etc) It took us until April to make the strep connection - he swabbed positive. Immediate, remarkable results with penicillin, which did not last. Tried Augmentin - but that was really really hard on his stomach. Tried to get into the NIMH study, but after much consideration was rejected. But, those great professionals took the time to recommend Dr. K. Dr.K confirmed PANDAS diagnosis, and recommended IVIg. Our local Dr.was willing to try IVIg - reasoning that it is a very low risk option. So, we got Dr.K's protocol and the NIMH protocol, and our Dr chose the one from the study. We did it over 2 days - outpatient- at the local children's hospital, and insurance covered it! NIMH (and Dr.K) also recommended prophylactic antibiotics for a year. He is doing 500 mg pen VK BID. I'm not sure if post IVig, titers are meaningful, but FWIW, his titers are down, but still above normal range. But, the titers are going in the right direction. We have a weird symptom, blood in the urine. That happened once pre-IVig, and happens again a couple weeks ago. We saw a nephrologist when it happen before, and again recently. We are in the middle of a whole bunch of tests. So far, we can't figure it out. (I posted about it previously, and had some great replies if anyone is interested. But, none of those suggestions have led to any conclusions...) Hope this is helpful to someone. This forum has been such a great resource to me! Link to comment Share on other sites More sharing options...
Pandasmex Posted November 13, 2011 Report Share Posted November 13, 2011 Good news!!! I will pray for you and your son. Congratulations and keep on fighting. Link to comment Share on other sites More sharing options...
Recommended Posts
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 accountSign in
Already have an account? Sign in here.
Sign In Now