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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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pepper1

PANDAS teen with severe OCD

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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

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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.

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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.

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