Wednesday, January 20, 2010

J and OCD

Well, it's been several months since I first started noticing issues with N's younger brother, J. He is the same age that N was when he spiraled into anorexia. I was concerned that J's responses were really based on his Grandmother's diagnosis of cancer. However, since then I really feel like they are not related.

J is developing OCD behavior that resembles what we experienced with N -- however there is no indication of anorexia being an issue. I feed him carefully and watch. His sudden onset of the OCD stuff last fall, however, points me back to PANDAS. And then I feel so mad at the pediatric neurologist who so quickly blew me off -- especially in light of some of the new studies that indicate there may in fact be a link.

It leaves me wondering what will happen if my boys are never able to get treatment for PANDAS (if indeed they have PANDAS). Can their bodies recover from this without antibiotic treatment?

4 comments:

Erica said...

Hey Wendy,
I can't answer your question about whether or not they will recover without treatment, but I would definitely ask your pediatrician for a low dose penicillin prescription (250cc twice a day is what we did) -- it is very safe, and then you can see if it makes a difference. To convince our doctor I printed out a bunch of research, contacted Dr. Zebriske who does research on strep, called the Swedo group, and told the pediatrician "I want to try this." Luckily for us, she was fine with it, but I can't say whether the treatment really helped. We delved into Maudsley at the same time, but it was a piece of our treatment puzzle.

Eileen Sroka said...

Hi Wendy,

I think we have emailed before. I am the mom of (now) two girls with PANDAS. There is a definate link to anorexia and pandas, especially if it starts suddenly and at a young age. So many pandas families have multiple kids with this nasty disorder. You NEED to get your kids antibiotics, and possibley steroids. I am not sure where you are located- there are only a handful of docs who really have any understanding of this disorder. Is there any way you could get your kids to Dr Latimer in Bethesda,MD? She is a pediatric neurolist with a special interest in helping pandas kids. Please feel free to email me at sroka2967@comcast.net

Eileen

Wendy said...

Eileen -

We have emailed before. I am following up with some contacts that you gave me for Colorado. However, I'm having a hard time getting the doctors to respond to my queries. I think I'll be able to get the boys into someone in Colorado this summer. But it doesn't seem fast enough.

Thanks!

Anonymous said...

It's been a long time since you updated. I hope everything is ok.