Absolutely nothing is helping!

[thereishope]

Does anyone know if NC has pockets of strep resistent to Zith?

 

Also, in regards to the Inositol, LLM or mom2pandas did a post describing how you work up to the desired dose. But not sure on what you start with and what you ideally should end up with. may be worth looking up.

[GatsMom]

Does anyone know if NC has pockets of strep resistent to Zith?

 

Also, in regards to the Inositol, LLM or mom2pandas did a post describing how you work up to the desired dose. But not sure on what you start with and what you ideally should end up with. may be worth looking up.

 

Hang in there and know that answers are making their way to you. I'm from E. TN and have spent the past 4 years of my life trying to explain PANDAS to the local medical community. Now we're working with Dr. T. There is a night and day difference when you are aligned with a physician who truly understands the underlying mechanisms that are at play in our kids. I cannot recommend highly enough seeking help from one of the experts. Find the success stories, print them and read them multiple times each day until the belief that recovery happens is firm in you.

 

Vickie: I'm looking for the inositol schedule we used for my son during the last exacerbation. At the time, it didn't make a noticeable dent in anything for him BUT we were not treating with abx at that time. I absolutely would not rule it out as a valuable adjunct in combination with any other therapy.

 

Gat's mom

[MomWithOCDSon]

Have you tried months-plus of Augmentin XR?

 

Despite some saw-toothed recovery patterns, overall, our DS12 IS recovering, slowly but surely. And I've seen similar reports on the efficacy of XR.

 

Hang in there and don't give up! Consult the experts, keep trying different abx, and give them time to kick in and work. I don't know about you, but when we saw some almost instantaneous (within 2 days) results from the abx, we made the assumption the improvement would continue exponentially at that rate. It hasn't. But it has continued, just not as dramatically as the initial results would have led us to expect.

 

I will keep my fingers (and toes) crossed for you!

 

 

We have yet to try the Augmentin XR. Just getting the Zith was hard enough! Hopefully Dr. T can presribe that when we speak with him.

When you say give them time to kick in and work - what time frame are you looking at?

 

Like I said, we saw some very immediate improvements in terms of some of his more "minor" behaviors; specifically, his contamination concerns diminished dramatically within the first 48 hours. But then, over the next few days, those seemed to come and go again while his overall emotional lability began to slowly improve. It's hard because you're still contending with some disruptive and extreme behaviors at times, so I took a page out of Beth Maloney's book and started keeping a detailed journal. For the first month, sometimes I really needed to go back to the journal in order to remind myself that he was improving; his meltdowns were less frequent, less severe, less debilitating, and he recovered more and more quickly from them. There were still some really tough moments and some meltdowns, but it wasn't over every little thing anymore, and it didn't "stop the clock" in terms of making our lives grind to a halt while we attended to him over whatever had set him off.

 

In the second month, life overall became a bit easier. Again, he still struggled over certain things, but I would estimate the total meltdowns had been reduced by 2/3. He could "soldier through" some compulsions and obsessions, rather than be overwhelmed by them. As we've entered Month 3, I would say that has only improved yet more; he's taken on more responsibility and activities, but he's been holding his own emotionally despite our pushing him out of his comfort zone more and more often. I have to acknowledge, though, that alongside the abx, we're also still doing weekly therapy (ERP).

 

So, long way of saying, we were able to track subtle improvement over the first month, but there were definitely days in there where I might've been tempted to say, "This just isn't working. We might as well quit and try something else." But by recording pretty much every little thing, when discouraged, I was able to go back, read and recognize that while the improvement was slow, it was still very real. That's why I say don't give up too quickly . . . give it a chance. From what I've read here, sometimes abx, IVIG and steroids can have very quick, immediate positive impacts, but they almost always slide back a ways in the subsequent days or weeks, and then the family has to apply patience again and work through issues that resurface, though you thought they were gone.

[Megs_Mom]

I find this chart very helpful when thinking about what to try next and what kind of time frame to give a trial:

 

http://www.latitudes.org/forums/index.php?...amp;#entry52997