Need new treatment... post CDiff/extreme OCD

[withhelpandhope]

My daughter started raging with anxiety, urinary urgency, overwiping, clothes sensitivity, food restriction, after coxsackie, strep and flu season, starting in February 2016. After research, I worked with her ped and after 3 days on Augmentin, she was back to 90%. She got CDiff in July, and we took her off of Augmentin. But she was declining again, so we started her back on Augmentin. We had one glorious week in September until CDiff came back (to me) and then stomach flu for DD, turned her asymptomatic CDiff into diarrhea. We've all been on Flagyl the last several months off and on and she has been in a constant flare since July. Now she's started a throat clearing tic, 300 times a day she asks me if she's going to throw up, and tilts her head to the side, with chronic stomach aches and worry. Our naturopath doctor gave her a Cunningham panel which showed no elevated titers (although she has been on Augmentin for several months) and ND said she doesn't have Pandas. Why does she do so well on Augmentin if she doesn't have Pandas? The ND says the Augmentin must have been helping her gut dysbiosis?! (And it helped her to stop being housebound, not eating, sensory/rage to the max, worry/anxiety, stomach aches, etc) We were referred for a full mental health evaluation and then referred to neurology and infectious diseases doctors through her pediatrician. Please tell me, what should our next steps be? There are very few specialists on the West Coast. We are in Oregon. What else should we test for? Who can help us? Any recommendations on specialists? We definitely can't fly anywhere, as she won't leave the house. We've spent so much money on supplements that don't do what Augmentin did. She's currently on Florastor and Gut Pro.

[jan251]

FWIW, Florastor is what I'd suggest for c-diff but I have a huge caveat. Saccharomyces boulardii (what is in Florastor) is a major, major, major problem for my ds. In fact, it immediately preceded the onset of OCD (he also had undiagnosed strep, myco, lyme, an immune deficiency, and a long history of gut issues). If I give him more, he gets an obvious increase in OCD within hours. Other than stopping the s. boulardii, I have not figured out how to undo it. Probiotics have not been helpful. I feel like there's a huge missing key in the gut for us. Adding, recently I've begun worrying that the s. boulardii took advantage of a bad situation - immune deficiency and leaky gut - and created some type of systemic fungal problem. There are reports of this happening and it's not terribly easy to fix without prescription antifungals.

 

I'm just a parent but I'd disagree with your ND - why can't the gut dysbiosis be part of PANDAS? It's just a term for messed up microbes in the gut. Strep can live in the gut as well as other germs.

 

The Cunningham panel is another issue, though perhaps you're right that the augmentin could have affected the result. My understanding is that it's best to test when there are major PANDAS symptoms.

 

I'd do a thorough search of this forum for West Coast specialists and possibly start a new thread asking so that you might get private messages with names. I don't know about Oregon but I'm sure I've seen discussion of Bay Area possibilities. It's too bad that the Stanford clinic is so limited.

Edited November 11, 2016 by jan251

[MomWithOCDSon]

Wow. So sorry you're going through this.

 

If you can travel by automobile south, I know that there are some PANDAS specialists in the Northern California area (Stanford, etc.). Hopefully, someone more geographically knowledgeable on that front will speak up soon. In the meantime, you could check the "Doctors Who've Helped Us" thread in the Pinned threads at the top of this PANDAs forum:

 

http://latitudes.org/forums/index.php?showtopic=5023

 

As for why Augmentin may have helped her, even if Cunningham does not confirm PANDAS/PANs: possibly, 1) she DOES have PANDAS/PANs, and the Augmentin is at least partially successful in quelling the autoimmune response; 2) Augmentin is thought to have other properties, thanks in part to its clavulanic acid component, such as anti-inflammatory, glutamate-modulatory, anti-depressant, etc. My DS took Augmentin XR for nearly 2 years because it helped him the whole while, and every time we tried to reduce or cease it, he would slide back into previously abandoned behaviors.

 

I would not hold out too much hope for the neurologist or the infectious disease doc; in our area, at least, these folks err to the side of DSM and "conventional" response and decide that PANDAs/PANs remains a "controversial" and/or internet-based, "rare" (if existent at all) phenomenon that your child couldn't possibly have. So you're the crazed parent who just can't accept that your child has a purely psychological disorder. There is the possibility, however, that you'll get lucky with someone who's more intellectually curious.

 

The whole C-Diff thing is tough and very unfortunate; it is, in fact, one of the primary reasons that leaders in the PANDAs research and practice fields do not advocate for long-term abx use for the disorder (even though many of us have used long-term abx successfully). Given your DD's tendency toward C-Diff, you might find that one of the other, non- or shorter-term abx interventions to be a better answer: IVIG, plasmapheresis, and/or steroids.

 

As for Florastor (saccharomyces boulardi), if you run a search for that particular probiotic here on the forum, you'll find a subset of kids who respond unfavorably to it. Since you're doing Flagyl, it might be worth trying taking her off the Florastor and see if her behavior improves at all?

 

And finally, though I think you're absolutely right to seek out medical intervention for your DD, I would also consider finding a good CBT/ERP therapist to start helping her (and your family) push back some therapeutically at the OCD. While it may be difficult for your DD to participate fully in the therapy until her health takes a more positive turn, it will likely give you some very valuable tools for managing some of the behaviors during the healing process.

 

All the best!