Back from Rothman

[PANDASmcnuggetsw/fry/coke]

We just got back from Rothman. Yes the RMcD House was wonderful and I'd do it again in a heart beat. It is so good to be home after the hard work done at Rothman.

 

Agnes26 are you on the board these days? We just missed you by a day I think. I'm hoping all is well.

 

No clear answers for us yet, but lots more bloodwork and ct scan to do. The docs there say classic PANS for DD originally, but now that she is chronic, need to treat like regular OCD (ERP and SSRI) while continuing to look for infection.

 

Also, switching to a new abx she has actually never tried.. minnocin. After 2 and 1/2 years of abx I thought she had tried them all!

 

DD seems sad and quiet after her time there. This was no picnic whatsoever.

[mama2alex]

Did she do the intensive 3 week program, or just go for medical testing/treatment? If you did the 3 week program, I'd love to hear additional feedback if you are willing to share. We are considering heading down there soon to address school anxiety/refusal. Sorry to hear she's sad after the visit. Any idea why?

[PANDASmcnuggetsw/fry/coke]

It was one week, trying to cram as much in as possible. Double appointments per day etc. I think so much more came out in ERP~~ it was just overwhelming.

 

 

 

 

Did she do the intensive 3 week program, or just go for medical testing/treatment? If you did the 3 week program, I'd love to hear additional feedback if you are willing to share. We are considering heading down there soon to address school anxiety/refusal. Sorry to hear she's sad after the visit. Any idea why?

[philamom]

I feel for your daughter. My daughter is not dealing with your level of OCD, but is working on ERP for a severe fear of vomiting and a severe fear of her classmates vomiting. The ERP is very, very difficult. We are working on both exposures each day. She is also often sad and quiet afterwards - it takes alot out of them. Hopefully, your dd will continue to try. SmartyJ posted a website that I've found to be very helpful- www.anxietybc.com. They even have videos of teens sharing their progress with ERP.

 

Good luck with the Minocin.

[PANDASmcnuggetsw/fry/coke]

Thanks Philamom...it is good to know we are not alone. Your daughter has some very difficult struggles as well.

Thanks for the website. I'll check it out.

 

Hoping things get better and brighter for all of us!