gluamate

[Guest pandas16]

Glutamate is mentioned here but how many have seriously stuck with glutamate modulating drugs... I mean like for a year or longer to really see if there is benefit

[MomWithOCDSon]

We have . . . for the better part of 2 years now. Augmentin, beta-lactam abx, 2 years. NAC, 1.5 years. Lamictal, 10 mos.

 

We will stick with the NAC and Lamictal, even as we decrease the Augmentin and hopefully, eventually, go off. We do so with much hesitation because of the assistance it has provided which, to us, clearly extends beyond any bacterial zapping characteristics. But it just doesn't seem possible to leave those in play much longer for a variety of reasons.

[nicklemama]

DS has been on lamictal for 16 months but he's in the process of weaning off it. He's got about a month to go. It's been a long weaning process. What we saw was a reduction in anger and irritibility. Didn't do anything for OCD, separation anxiety, anxiety and the multitude of other symptoms he had. The only thing that helped those was abx and IVIG.

[PhillyPA]

Pandas16 - I am curious. What pandas symptoms are you currently suffering from? When did your symptoms return (at what age)?

[Christianmom]

I have tics and ocd. They came back a soon as adolescense ended. Remission ages 11 through about 19..... I'm doing OK with tso at the moment.... trying homeopathy as well. If that doesn't work I'm doing a brain stimulation clinical trial in January....I was also thinking of the jernigan protocol for Lyme. I emailed the Hans a center a while back, they said they could help with pandas

Are you not continuing to get relief with the homeopathy (or at least not 100%)? What does your homeopath think about that?

[MomWithOCDSon]

Why do you say that?

 

I say that because 1) I don't know that we'll be able to get anyone to continue the scrip much longer, and 2) so long as he can maintain, I don't want to continue to put abx into him. Swedo has been pretty vocal about not believing in long-term abx, and our current pediatrician follows her fairly closely; so, he gets PANDAS in its standard, sudden-onset form and prophylactic abx as needed. But with a child who's never been classically symptomatic for strep, we're pushing the boundaries for continuous abx so far as he's concerned.

 

As for how much help we've gotten from these interventions . . . the Augmentin XR has been key, and even after titers had fallen to normal range, for a long time, tapering or removing the Augmentin was impossible as he would quickly (within 8 days after reduction) decline. We're finding now, however, that reduction is possible without losing dramatic ground. Is that because the glutamate is finally, at long last, under better control? Floating around in his brain at more moderate levels? Don't know.

 

The NAC does seem to be helping . . . hopefully helping to cover some of the ground formerly covered by the abx. He's been on it for a long time, though, and we did have some tougher times while taking it, so not entirely sure what the "magic potion" or timing is there. Perhaps it takes NAC a long time to have any noticable effect and we're finally getting to that point.

 

As for Lamictal, I've seen Nicklemama describe her family's experience before and I think a couple of other people have had similar things to say. All I can say is that our experience has been different, though perhaps similar. I'm not certain I would say that the lamictal has helped the OCD so much as it's made it possible for DS to do his own work (ERP) to combat the OCD. It's given him his power of reasoning back so that he can see the OCD for what it is more often than not, a trait he didn't have in spades, even at his healthiest, prior to the lamictal.

[nicklemama]

We haven't tried anything else. DS is doing extremely well right now (knock wood). I wouldn't discourage anyone from trying lamictal, just that it doesn't work on OCD for everyone. That said, our kids are not all the same. Some have underlying, diagnosable immune dysfunction. Some have very high titers. Some are sick w/ strep frequently. Some present w/ OCD, some w/ tics, some w/ both. Some, like my son, are otherwise very healthy,rarely sick, no positive cultures, no positive titers. I believe strep is the culprit for my DS, as he reacts when exposed to others w/ strep. He was, however, vaccine injured by the regular Flumist in Oct 2009, which set off his huge exacerbation. The two things that have given him such good function back are abx and IVIG. That cannot be said of every PANDAS child. There is so much more research to be done. And, he's only an exposure or illness away from going right back where he came from. Of that, I am very aware.