Jump to content
ACN Latitudes Forums

PANDAS teen with severe OCD

Recommended Posts

Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other options we have but can't give up on him. He's had many IVIGs with no real lasting improvement. SSRI's did nothing but make him aggressive. Recently, we changed the antibiotic from Keflex to Zithromax, hoping for a faster improvement, and everything fell apart. He's back on Keflex and motrin for over a week and still no improvement. Very worried

Link to comment
Share on other sites

I am so sorry.  DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily.  At first, he got a bit worse, then remission came two months after the taper ended.  He remains on antibiotics and turmeric.    Would he be willing to try steroids?  Clearly needs to reduce brain inflammation.  Again, terribly sorry.

Link to comment
Share on other sites

Pepper1 --

I find myself wondering if the school he is attending, or some outside professional intervention, is available to him with respect to the OCD?  Does he see a psychologist for cognitive behavior therapy or exposure response prevention therapy?  Is the school one familiar with OCD/anxiety and appropriate interventions for addressing it?

As a mom of a DS for whom PANDAS treatment brought him back from the brink, but for whom anxiety and some OCD behaviors continued to play a role for quite some time -- years -- following PANDAS treatment, I'm a big believer in therapeutic interventions, especially for these older kids who have a better intellectual grasp of their anxieties.  Particularly with respect to OCD, therapy, in conjunction with the medical treatment for PANDAS (and anxiety medication, should you deem that appropriate), can really make a very big, positive impact.

All the best to you.

Link to comment
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...