Jump to content
ACN Latitudes Forums

Recommended Posts

Hello everyone,

I was originally diagnosed with PANDAS in 2004 at the age of 5. I experienced severe tics, OCD/anxiety, behavioral issues, and sleep problems. At this time, many doctors had no knowledge of this disorder, so i was prescribed both penicillin and clonidine. At the age of 12, my symptoms had almost completely disappeared. I still had all of the symptoms when first diagnosed, but not nearly as severe. I'd say my PANDAS has been in remission for a while, but recently it has come back and it is extremely severe. However, since I am no longer considered a pediatric patient, I do not know where to start or how to receive treatment. I need help and any advice would be appreciated. My parents are very conservative with money, so I do not have many options as I still live with them.

Thank you for your help.

Link to post
Share on other sites

We've know our now college age kids (now 22 and 20) have had PANDAS since middle school. There symptoms actually go back to when they were toddlers. We just were not lucky enough to have figured things out until much later. We finally found a PANDAS, Lyme friendly doctor when they were 18 and 20. While she primarily treated children she was completely open to working with my older kids and me (I have Lymes). Unfortunately she just closed her practice. Fortunately she referred us to another physician, again, primarily a pediatrician, but very open to treating all of us. I think it is more important you find someone familiar with PANDAS whether or not they are a pediatrician. If they really understand it they will likely treat you.

 

Good luck!

Link to post
Share on other sites

Hi Sarah,

 

I'm twenty-two and have had PANS since I was eleven, and probably even longer. Most PANS specialists will treat adults, because there are plenty of us who still have it. My worst episode started when I was about nineteen, and that was the first time I went to see a "pediatric" doctor who specialized in PANS. I was successfully treated by this doctor and went into remission until I got Lyme a few months ago. There's a list of specialists on the PANDAS Network website that you could look into. I'd be happy to talk if you'd like to message me!

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...