Going to Ped tomorrow- advice needed

[Tattoomom]

Going to Ped tomorrow. PANS son (12) is in a flare and has a mouth stretching facial tic. He's on Zith 3x's a week (M,W,F) and Zoloft. What should I ask for? Daily abx? What's the protocol to deal with flares? Also, any links to print info on long term abx use? I hear from a lot of parents that their kids are on MULTIPLE abx DAILY. How do I get them to see that?! They are constantly wanting to "wean down" or "wean off" when my kids clearly need the daily dose! And the most we've been on is once a day Zith. Then they wanted me to spread it out to once a week! When my daughter caught strep on once per week, they agreed to 3x's a week. I just wish there was something I could print out and bring with me tomorrow. I need to walk in prepared!

[blakes_mom]

My favorite article to bring with me is on www.ocfoundation.org site. It is an article called sudden and severe onset OCD - practical advice for practitioners and parents. It is a nice article that breaks down all the treatments for pandas and gives specifics about antibiotics. It is written by Michael Jenike MD and Susan Dailey. Good luck at your appointment and be strong.

[rowingmom]

It's probably time to find a PANDAS specialist or LLMD. Don't waste too much time trying to educate your doctors or change their minds. Most are very resistant and will not think any better of you. Good luck.

[T_Anna]

How far are you from Tampa? It might be worth trying to see Dr. Tanya Murphy at University of Southern Florida.

 

I agree with Rowingmom. This is hard enough to treat, find someone who already understands.

 

 

T.Anna

[nicklemama]

DS is on multiple abx after I finally found someone local who is learning and interested and listens to Dr T's radio program. She especially interested in what Dr Bhakta says. It's taken me years to find local help that really listens and doesn't mind tossing aside the guidelines.

[Tattoomom]

We are lucky enough to have a board certified Holistic Pediatrician. She is eager and willing to help, but she only works 3 days a week. Her partner (not holistic, but tries) is who we are seeing today. We cannot afford a PANDAS specialist.

[nicklemama]

Would they be willing to listen to Dr Bhakta on radiopandas? All the programs are archived and can be listened to. Dr Bhakta is on two or three of the programs. DS's local doc is very impressed and I think that's what gave her the push needed to do multiple abx at one time. Dr Bhakta is an integrative type doc in Calif. I think a holisitic ped would really like her approach. DS's doc is an integrative doc. I've listened to her myself. She is the most spot on I've heard. She really looks at all the angles of PANS.

[airial95]

Tricia,

 

I already posted an answer to this on the FL PANDAS page, so I won't repeat myself. But as to a PANDAS expert, the Rothman Center takes insurance (we have UHC and they take our) if that helps, she's one of the few that does. Also, it's still a drive for you, but we have an excellent pediatrician in the Tampa area that treats with long term/multiple abx as needed. Yes, he's the one that initially wanted to "wean us off" too - but saw very quickly that it didn't work (that was 3 years ago!) He's now our go-to guy when things get bumpy. I can give you his info if you're interested.

 

Sandra