International OCD Foundation Website

[thereishope]

As for specific doctors being listed on the site, does anyone know if their info is given when a personal message is sent to the IOC Foundation? I understand not publicly listing it on a Fact Sheet, but if they at least have the info for severe cases, that would be nice. I know they suggest therapists and docs for other disorders.

 

If a suggestion is ever made to the IOC Foundation, in my opinion, it would be to add a link to the PANDAS Network website (www.pandasnetwork.org) At lesat they will then then be connected to Buster's full Fact Sheet as it appears on here, the FAQ Sheet,all the research including IVIG and PEX, and this forum.

[Joan Pandas Mom]

Does anyone on this site even use SSRI? I know Dr. Murphy published an article stating in some cases they can make PANDAS worse. Dr. Nicoladies took Sammy off SSRI because of this. We went the SSRI route for 5 1/2 years without any results. Is anyone using them for PANDAS? Do they work?

 

I read through it and the most glaring omission is IVIG and Plasmapheresis as potential treatments. They only mention antibiotics (along with SSRI's and CBT).

 

Also I noticed at the bottom under "More Information" they only have the following:

 

The PANDAS Foundation http://www.pandasfoundation.org

Author: Evelyn Stewart, MD, Massachusetts General Hospital

 

No other resources are listed.

[JAG10]

Our dd10 used ssri's (zoloft, prozac, celexa, st. john's wart) for 4 years. We found that they 1) resulted in behavioral activation (intoxicated, hyperactive, mania-like behavior that some psychs will say is early bipolar, but goes away when the ssri is stopped, so not bipolar) which we used stimulants to try to control 2) didn't work the way they expected them to in that they are supposed to take 4-8 weeks for full effect and with my dd we would see a marked improvement immediately- within a day or two, it would last awhile and then it would eventually (sometimes weeks, sometimes a 1-2 months) stop working. We could never get a consistant, lasting response with ssri's even if we were willing to continue to use stimulants to supress the behavioral activation the ssri's caused.

 

Interestingly, I read on another post parents debating OCD vs ADHD symptoms. My dd always had a more beneficial initial response to ssri's than stimulants which is why I think her internal preoccupation/inattention is OCD-related rather than ADHD.

 

We are not doing ssri's anymore. They do not manage the problem effectively.