What is "typical" PANDAS response to Abx

[VickyLH]

Hi again everyone, my suspected PANDAS son (positive for Strep throat) started on Amoxicillin for a few days and then was switched to Augmentin (250 mg x3 per day) 2 days ago. His initial response to the Amoxicillin was somewhat positive the first day but then he took steps back and we began to see new tics appear and he had extreme sadness in the evenings. We switched to Augementin and the next day (yesterday) he was back to his old self for most of the day (it was so nice to have him back for a while!). However last night he took a turn for the worse again and started having anxiety, repetitive behaviors and his pupils were dilated. Today he's extremely twitchy, won't sit still, has vocal tics, throat clearing tic, is repeatedly touching things, retracing his steps, etc. I've noticed a couple of other parents mention a zig zag recovery while on Abx. Is this normal? Do others also find the tics/OCD tendencies shift from one form to another during treatment/recovery. I was so hopeful yesterday, but today I feel defeated once again. I'm not sure if we should just sit tight and see what happens, or if this is a sign we need to adjust something... possibly a stronger dose of Augmentin (he's 11 and 72 lbs).

 

I'm sorry for the million questions lately. It's tough trying to figure this out on our own without the guidance of a doctor who actually believes in PANDAS. Does anyone have the e-mail address of Dr. Corbier in Concord NC that you could PM me? We don't see him until April (although we're on the cancellation list so hopefully it will be sooner) but I want to contact him to see if he can provide us/our Doctor some guidance prior to our appointment. We have an appointment with an Pediatric Immunologist next Monday (Dr. O'Connor in Concord NC) who was recommended by someone on this forum, but I'm not sure how much she can help us with Abx or exactly how much experience she has with PANDAS.

 

Thanks,

Vicky

Edited January 6, 2011 by VickyLH

[thereishope]

In my experience, I noticed some improvement from antibiotics in my son betwen days 3-5. Even at that point, no where near 100%, but I saw something was happening. It was a road of improvements and setbacks. Not all symptoms went away at once either. Being that your entire family had strep as well, your son's immune system is really taking a beating. What antibiotics was the rest of the family put on?

 

As for shifting OCD tendencies, yes we did have new ones emerge even after onset. In exacerbation #3, when we also had to overcome residual OCD, we had new OCD tendencies emerges even as old ones were overcome.

[MomWithOCDSon]

Are there ups and downs in abx response? In our case, the answer is a resounding YES!

 

Remarkably, our DS had a very positive response within about 48 hours of beginning the abx the first time; it was almost as though he'd gone back in time, that's how dramatic the response was. He went from being a mopey, whiny, clingy, contamination-obsessed kid to his old laughing, witty, irreverant self again.

 

But that dramatic change lasted for about 10 days, and then it seemed like, though the behaviors that had disappeared with the advent of the abx stayed away, he exchanged them for some other ones. So we stayed on the abx and used some ERP techniques, and slowly each of those new behaviors would be set aside, too. But we never again saw the dramatic improvement rate we'd originally experienced.

 

Over the course of a year, we actually started and stopped abx usage several times because his improvement would plateau to the extent that we were convinced it had done all it could for him. But when we'd take him off the prescription, within a matter of 8 or 9 days, we'd begin to see the old OCD behaviors worming their way back in again, and at an increasing pitch, until we once again began regularly dosing him with the abx.

 

Even while on the abx, it can feel like one step forward and two steps back at times. How much of that is learned/behavioral from having to cope for extended periods with the OCD thoughts swirling around in his head, I don't know. But, overall, we continued to see improvements throughout the 13 months of full dose abx, and we continue to see them today. When DH and I sat down and compared notes about last Christmas versus this one, we realized just how far our dear boy has come in that time frame.

 

Long way of saying, yes, I think the improvement and response can be very uneven, especially when you view it from a day-to-day basis. But keep a journal, and then start giving it a glance from the perspective of one month ago, or three months ago, etc. I'm betting you'll start to see that, overall, the gains continue; its just the trajectory that slows down, for whatever reason. My personal experience leads me to encourage you, however, not to give up on abx as a viable therapy too quickly. It's hard, I know . . . especially in the cases in which your child was virtually struck overnight with this condition . . . to accept that the healing may be extremely protracted. But so long as the healing continues on some level, it may serve well to stay the course!