Not pursuing aggressive treatment

[LaurenK]

Wondering if maybe I am being treated too aggressively? If I should be looking at other things? How many have a severe case of PANDAS but have not pursued IVIG and other immunosuppressants? & why?

[LNN]

What may be "too" aggressive for one may be just right for another. I think it depends on what trigger drives a flair and what your overall health situation is (are you dealing with "just" strep or are there other factors, such as mold, nutritional deficiencies, chronic infections, genetic hurdles (e.g. methylation defects)...

 

I think the one universal treatment anyone with OCD should be receiving is ERP (exposure ritual prevention). Regardless of cause or additional medical treatment, ERP is essential to learning to cope with OCD when it crops up and also provides you with incredible general coping tools that last a lifetime.

 

When you wonder about being too aggressive, what does that mean? What is your current treatment? What is your overall health situation?

[airial95]

My son was a severe case, and thus far, we have only done abx and therapy - and have not gotten more aggressive than that. It ultimately is a personal decision - as you know your child best. Our son was barely 2 yo when he was dx. Abx straight would get us to 80-90% normal, but we were still getting strep constantly. When we did T&A last fall was the first time he was 100%. We relapsed 6 weeks later with another positive strep test. We felt he was just too young and small for IVIG or anything else)

 

He will be 5 next month and we have finally started discussing more aggressive treatments. (We also figured out a few new pieces to our puzzle this summer - dad's high titres, positive for Lyme, mold in our AC)

 

You know your child best and what recovery they can handle and are capable of.