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glutamate questions...anyone tried blockers? huperzine-A?


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I know Glutamate blockers have been used sucessfully for OCD. Has anyone used them in PANDAS kids? Also, is it even known if PANDAS kids have excess glutamate (like others with OCD)?

 

Also does anyone know if they take a few weeks to start working? or are the effects quicker? (okay I'm posting a study that I haven't read yet...maybe it says here) http://intramural.nimh.nih.gov/pdn/pubs/pub-25.pdf

 

Here are some other glutamate blockers:

-advil (just found this out by googling around!!!!)

-namenda (memantine) used for alzheimers

-dextromethorphan (delsym cough syrup)

-huperzine-A (extract of the Chinese Club Moss)--can get at GNC etc.

 

 

And then here's the old thread about antibiotics helping to protect against glutamate toxicity. http://www.latitudes.org/forums/index.php?showtopic=9502

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Hi EAMom --

 

The whole glutamate/OCD connection is sort of "pet project" of mine in terms of interest. I think Melanie may have tried Namenda with her son; I'm sure she'll chime in if my memory is accurate.

 

I don't know about the blockers, really. The use of glutamate antagonists, like riluzole, have been widely announced with respect to OCD, and the riluzole trial at NIMH for "treatment refractory OCD" in kids is, I'm told, showing great promise for the drug in that capacity. Dr. Grant is heading up that trial, and I've corresponded with him about some of the "coincidences" between PANDAS kids and "typical OCD" kids, such as the fact that Dr. Rosenberg at Children's Hospital of Detroit has found that the caudate nucleus of kids with OCD tend to have higher concentrations of glutamate in them than do non-OCD kids, and Swedo has found that the caudate nucleus of PANDAS kids is enlarged. He says the possible connection is "intriguing," but I've not heard any follow-up; I think everybody's got their hands full trying to corral their own individual pieces of the research puzzle.

 

Meanwhile, I can say that we're having some good response to another glutamate-impacting drug used off-label for OCD: lamictal, or lamotrigine (generic). Our PANDAS DS entered a fresh, harsh exacerbation in mid-February of this year, and we were having trouble getting the OCD behaviors to recede. Our psych suggested we try a "mood stabilizer" to try and quell some of his distress over the compulsions and rituals. We first tried Abilify, and first it did nothing, and then once the dose was increased, he went bezerk. So we went off that. When she listed a number of other options (neurontin, lamictal, remeron), we did some research so that we could play an active role in the decision. Finding that lamictal is believed to inhibit sodium channels which, in turn, causes modulation of glutamate, sold us on a trial.

 

Our DS has been on a low dose of lamictal since April 22nd, and he has done nothing but improve. His OCD has diminished by . . . I would estimate . . . 60% in the four weeks he's been taking that drug. Now, some of that may be coincidental with overall improving health, lack of re-exposure to strep, etc. It's so hard to isolate cause and effect with these kids!

 

I will also say that we saw a positive difference in our DS on Day Two of adding this medication, though both the psych and web research suggested that the positive impact would build up over time, not unlike the 4-6 week schedule for typical SSRI's. Still, there are some other forums on which lamictal is discussed and some people enjoy immediate relief from it.

Edited by MomWithOCDSon
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Hi

 

Dannys been using Namenda for about 2 months.I have found it very effective at a low dosage for his OCD.When I increased it to 5 mg I found him aggitated.Im not sure if it was the increase or the antibiotic we were using at the time.I couldnt get my insurance to cover the rizole but they would cover the namenda(dont really know why)

 

Melanie

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My child tried riluzole for a short time and I feel like it was helpful, or at least would have been. She began to refuse medication, so it was not used longer than a week or so.

 

If she agrees to restart medicine- this would be among the first ones I would encourage.

I was not aware of the other potential sources of glutamate blockers.

Interesting.

Our insurance covered Riluzole, thankfully.

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Hi EAmom, I tried to send you a message and it didn't go through. I was wondering if your mailbox was full?

 

hmmm...maybe. I just deleted a bunch of stuff so there should be room now if that was the problem. :)

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Hi EAMom --

 

The whole glutamate/OCD connection is sort of "pet project" of mine in terms of interest. I think Melanie may have tried Namenda with her son; I'm sure she'll chime in if my memory is accurate.

 

I don't know about the blockers, really. The use of glutamate antagonists, like riluzole, have been widely announced with respect to OCD, and the riluzole trial at NIMH for "treatment refractory OCD" in kids is, I'm told, showing great promise for the drug in that capacity. Dr. Grant is heading up that trial, and I've corresponded with him about some of the "coincidences" between PANDAS kids and "typical OCD" kids, such as the fact that Dr. Rosenberg at Children's Hospital of Detroit has found that the caudate nucleus of kids with OCD tend to have higher concentrations of glutamate in them than do non-OCD kids, and Swedo has found that the caudate nucleus of PANDAS kids is enlarged. He says the possible connection is "intriguing," but I've not heard any follow-up; I think everybody's got their hands full trying to corral their own individual pieces of the research puzzle.

 

Meanwhile, I can say that we're having some good response to another glutamate-impacting drug used off-label for OCD: lamictal, or lamotrigine (generic). Our PANDAS DS entered a fresh, harsh exacerbation in mid-February of this year, and we were having trouble getting the OCD behaviors to recede. Our psych suggested we try a "mood stabilizer" to try and quell some of his distress over the compulsions and rituals. We first tried Abilify, and first it did nothing, and then once the dose was increased, he went bezerk. So we went off that. When she listed a number of other options (neurontin, lamictal, remeron), we did some research so that we could play an active role in the decision. Finding that lamictal is believed to inhibit sodium channels which, in turn, causes modulation of glutamate, sold us on a trial.

 

Our DS has been on a low dose of lamictal since April 22nd, and he has done nothing but improve. His OCD has diminished by . . . I would estimate . . . 60% in the four weeks he's been taking that drug. Now, some of that may be coincidental with overall improving health, lack of re-exposure to strep, etc. It's so hard to isolate cause and effect with these kids!

 

I will also say that we saw a positive difference in our DS on Day Two of adding this medication, though both the psych and web research suggested that the positive impact would build up over time, not unlike the 4-6 week schedule for typical SSRI's. Still, there are some other forums on which lamictal is discussed and some people enjoy immediate relief from it.

 

Wow...great information. Thanks!

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Wow, this is great info. The psychiatrist put DS7 on lamictal nearly a yr ago as something to help w/ his anxiety. He was having rages and our lives were just awful. We saw an improvement w/in a week. He has been on 50mg twice a day since July of last year. I don't know how much it helped his ocd. It did knock down the raging so that he only got really angry instead. He was able to direct his anger to a beanbag chair. His therapist worked w/ him for many, many months to try and get him to direct his anger at the beanbag chair rather than us!

 

He still has ocd. Its not terrible or incapacitating. Hmmmm. He started lamictal 9 months after his first PANDAS episode(that we did not know about at the time).

 

I'm going to have to look at my journal of his behaviors. Yes, its my ocd, lol.

 

We still have DS7 on lamictal but I have been planning to wean him off when he reaches 3 months post IVIG.

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We're very grateful for the boost the lamictal has given our DS in terms of managing his OCD.

 

I tried, unsuccessfully, to convince our psych to give our DS a try at riluzole or namenda based on the emerging glutamate research. She was reluctant to do so because these drugs, she says, are still being researched and made subject to trials for their efficacy and safety for kids and she's not equipped for monitoring the possible physical impacts of these drugs on an ongoing basis the way the trials are set up to do. So when she offered an option like lamictal with which she was both familiar and comfortable, and it had the glutamate modulatory component, as well, it seemed like a no-brainer.

 

As a side note, our psych has commented that glutamate is becoming the "serotonin of the 2000's," meaning interest in the role of glutamate in brain function is now captivating both consumers and researchers in much the same way serontonin did in the 1980s and 1990s.

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Nancy-

 

I am really interested. One of our daughters (we have 2 with pandas) has been doing great(relatively speaking) and is in recovery from a pandas episode. What we are stuck with is some ocd. She is not really bad enough, right now, to be a candidate for pex, maybe ivig, however the ocd is intrusive. The only thing she really is having trouble with is getting to school (fear of vomiting). Otherwise, is generally cheerful, cooperative, doing schoolwork, socializing, etc. We do erp (and are doing some intensive work this summer), but it would be great if something could take the edge off to help her find some inner motivation/ can do it spirit. She is on 12.5 mg of zoloft- seems, maybe, to help with mood, not with ocd- will be weaning her off this summer (again).

 

Anyway- thanks!

 

What would the possible issues side effects be with lamictal- I mean, I will research it, but off the top of your head....

 

Eileen

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Nancy-

 

I am really interested. One of our daughters (we have 2 with pandas) has been doing great(relatively speaking) and is in recovery from a pandas episode. What we are stuck with is some ocd. She is not really bad enough, right now, to be a candidate for pex, maybe ivig, however the ocd is intrusive. The only thing she really is having trouble with is getting to school (fear of vomiting). Otherwise, is generally cheerful, cooperative, doing schoolwork, socializing, etc. We do erp (and are doing some intensive work this summer), but it would be great if something could take the edge off to help her find some inner motivation/ can do it spirit. She is on 12.5 mg of zoloft- seems, maybe, to help with mood, not with ocd- will be weaning her off this summer (again).

 

Anyway- thanks!

 

What would the possible issues side effects be with lamictal- I mean, I will research it, but off the top of your head....

 

Eileen

 

Hi Eileen --

 

Well, the most prominently noted possible side-effect of lamictal is Stevens-Johnson syndrome, a skin infection/condition that's pretty scary to consider.

 

Stevens-Johnson Syndrome

 

Frankly, made us stop and think for a bit. But upon some more research on that particular illness, incidences of it have been attached to everything from NSAIDS to penicillin to anti-convulsants (the class of drug lamictal falls under). Cases associated with these drug uses, however, are generally thought to be associated with high doses administered quickly, as well as in conjunction comorbid conditions. Needless to say, though, I kept an eagle-eye on DS's skin for the first couple of weeks of the medication, just to make sure! ;)

 

More common possible side effects, according to the psych, are headaches and dizziness. Anyway, we started "low and slow" and have seen none of the side effects whatsoever thus far (knock on wood!). No headaches, nothing. We began with only 25 mg., once each day, for 1 week, increasing it to 50 mg. divided among two daily doses. At our last appointment, the psych suggested we increase it another 25 mg. per day, but thus far, we're not willing to go there. Our historical experience has been that "a little more" is frequently "too much" for our DS when it comes to these medications, and his improvement trajectory continues to be upward, so why mess with a good thing?

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I went super slow w/ the lamictal and took about two months to get to 100mg a day, divided into two doses. We went up until the raging stopped. My DS is 7.5, 55lbs now. He was 6.5 and a few pounds lighter nearly a yr ago.

 

The Stevens-Johnson thing scared me a lot. My DS gets really red eyes as a product of his allergies(takes rx eyedrops for it) and it took me a while to relax when I saw his red eyes and not panic that it was Stevens-Johnson syndrome. He also gets eczema.

 

My best friend has been on lamictal for more than 10yrs now for her seizure disorder, w/out any problems. That made me a feel a little better.

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My DS10 has been on Lamictal since November 2009. He is 110 lbs and takes 175 mg. This was originally prescribed for abnormal EEG (he has never had a seizure). This string of posts is very interesting and fascinating (to me)now that we are delving into PANDAS- that this med is so helpful for the OCD behavior as a glutamate blocker! He had greatest improvement in behaviors since being on this med except it does not seem to be as effective with exacerbations following Strep. Tics and OCD exacerbation following Strep only improved on high dose Azithro while already being on Lamictal. He was trialed on Keppra and Depakote prior to Lamictal.This was the best for him on many levels. EEG cleared to normal on this med.Interestingly, the other medications are not glutamate blockers. Got worse with verbal tics higher we went with Keppra and worse with OCD behaviors higher we went with Depakote. Both diminished with Lamictal.

 

He takes Lamictal XR formula which is still trade name and more expensive (I have good Rx insurance coverage- not much for me- but that may be a factor for some). We much prefer it to the Lamotrigine generic which is short acting- XR stopped the highs and lows associated with short acting formula. Just throwing that out there for those that have been pleased with med results- switching to XR is only better from nearly everyone I've ever talked to that has made the switch. For adults and children. My adult nephew takes it for Bipolar and confirmed the same effect for him after years of taking short acting formula.More even all day response. Without the brain fog, highs and lows. Which was great to hear as children can't always articulate how meds make them feel. As least, my DS does not:) I was able to "see" the more uniform response in him with switch but it was good to have adult confirm my observations.

 

I've been told that know some of the DAN docs are known to use very high dose Lamictal in ASD kids that have "hot" PET/SPECT scans which shows ring of fire type presentation. Beyond manufacture dosages even. Like 300-400 mg per day. Apparently, with good outcomes.

 

The SJS rash is very concerning and does cause one to pause significantly when considering med for child.Check skin daily when starting! However, key is to go low and slow on ramp up. I would even recommend slower than what docs prescribe. Lamictal tends to be one they either tolerate right away or do not. Know fairly quickly. We, too, saw improvements within days. Although, it was years ago, now.

 

Great string of posts:) Thanks for info on other glutamate blockers!

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