Riluzole anyone?

[melanie]

Got back from Psych visit and she gave danny a script for Riluzole.I had an interet in this about a year ago and she said no not yet Glad to see Medical community catching up with me.LOL dropped off the script Think we want to try looks promissing for OCD.

 

Melanie

[NancyD]

Melanie,

 

We tried Riluzole in early 2008 for 3 months following NIMH protocol and did not see any changes so we started to go off it VERY SLOWLY and it caused an overnight onset of THE MOST HORRIBLE non-stop motor and vocal tics. Nothing helped the tics until we started IVIg. Please keep in mind, NIMH clinical trials did not include OCD symptoms related to PANDAS, Lyme, or other co-infections. Have you ruled out Lyme, Babesia, Bartonella, and Mycoplasma yet? If not, I would do that first. IVIg did not help my DD's OCD or anxiety either but we just found out she has LD and possibly other co-infections so we are starting to treat that.

 

Nancy

[MomWithOCDSon]

Melanie,

 

We tried Riluzole in early 2008 for 3 months following NIMH protocol and did not see any changes so we started to go off it VERY SLOWLY and it caused an overnight onset of THE MOST HORRIBLE non-stop motor and vocal tics. Nothing helped the tics until we started IVIg. Please keep in mind, NIMH clinical trials did not include OCD symptoms related to PANDAS, Lyme, or other co-infections. Have you ruled out Lyme, Babesia, Bartonella, and Mycoplasma yet? If not, I would do that first. IVIg did not help my DD's OCD or anxiety either but we just found out she has LD and possibly other co-infections so we are starting to treat that.

 

Nancy

 

Nancy --

 

Did your DD have tics prior to the Riluzole? And if so, did they become MORE pronounced following withdrawal, or had you seen them at that level before, but just not recently?

[MomWithOCDSon]

Melanie,

 

We tried Riluzole in early 2008 for 3 months following NIMH protocol and did not see any changes so we started to go off it VERY SLOWLY and it caused an overnight onset of THE MOST HORRIBLE non-stop motor and vocal tics. Nothing helped the tics until we started IVIg. Please keep in mind, NIMH clinical trials did not include OCD symptoms related to PANDAS, Lyme, or other co-infections. Have you ruled out Lyme, Babesia, Bartonella, and Mycoplasma yet? If not, I would do that first. IVIg did not help my DD's OCD or anxiety either but we just found out she has LD and possibly other co-infections so we are starting to treat that.

 

Nancy

 

Melanie --

 

I will be very interested in your experience; please keep us posted. We had talked with the folks with the NIMH trial (Dr. Grant's office) and considered entering the trial. On the abx, however, our DS was finally doing fairly well for the first time in months, and the interruption to school, etc., flying back and forth for the first 3 months of the trial, was daunting. Our psych is not nearly progressive enough to "go there" yet, I think, but since we perceive that NAC (a glutamate agonist) is helpful to our DS, we find ourselves wondering if something more purely glutamate modulating, like Riluzole, might not be even more helpful.

 

 

Good luck!

[NancyD]

Nancy,

 

My DD had some motor tics prior to the Riluzole but withdrawal of the drug made them much much worse in intensity and it caused many more motor tics. It also triggered a Nystagmus, which she didn't have before, and horrible vocal tics, which she never had before. It was so upsetting!!!

 

Nancy

 

 

Nancy --

 

Did your DD have tics prior to the Riluzole? And if so, did they become MORE pronounced following withdrawal, or had you seen them at that level before, but just not recently?

[MomWithOCDSon]

Nancy,

 

My DD had some motor tics prior to the Riluzole but withdrawal of the drug made them much much worse in intensity and it caused many more motor tics. It also triggered a Nystagmus, which she didn't have before, and horrible vocal tics, which she never had before. It was so upsetting!!!

 

Nancy

 

 

I can only imagine!

 

I'm curious, too, because I've gotten feedback from others regarding the Riluzole, and quite frankly, it's been 99% positive. But these kids all have "pure OCD," no tics, no "tourettic OCD," etc.

 

It does seem as though tics can be contraindicative in terms of some treatment options, as compared to OCD behaviors without any tics, no? I've heard some here comment, also, that certain supplements (like fish oil and taurine) make tics worse, though they don't seem to have the same negative impact on kids without the tic side of the equation. Wondering if Riluzole has a similar impact.

[NancyD]

Yes, I too heard the same thing about Riluzole. That is why I was so anxious for my DD to try it. But the study included only individuals with pure OCD, no tics. I contacted the lead researcher at each of the sites after it happened (and also the pharmaceutical company to report it), but this was the first anyone had heard anything like this happening. But again, the participants did not have tics and they did not have PANDAS. My DD never had a problem with fish oil or taurine, but Riluzole set her down a very bad path. After this happened she became very reclusive and talked about not wanting to live. It was just heartbreaking. Thankfully she is a long ways away from that dark place.

 

Nancy

 

I can only imagine!

 

I'm curious, too, because I've gotten feedback from others regarding the Riluzole, and quite frankly, it's been 99% positive. But these kids all have "pure OCD," no tics, no "tourettic OCD," etc.

 

It does seem as though tics can be contraindicative in terms of some treatment options, as compared to OCD behaviors without any tics, no? I've heard some here comment, also, that certain supplements (like fish oil and taurine) make tics worse, though they don't seem to have the same negative impact on kids without the tic side of the equation. Wondering if Riluzole has a similar impact.

[melanie]

How come I never get the answer I want like the best choice ever my kid is cured LOL

 

Thanks Melanie

[MomWithOCDSon]

But again, the participants did not have tics and they did not have PANDAS.

 

Well, I don't know if they could clearly say that none of the kids in the study have PANDAS, really. I asked about that with Dr. Grant's office, as well, and "non-PANDAS" was not part of the entry criteria. In fact, I gave them a list of the medications and supplements our DS was currently taking, and they didn't blink with regard to the Augmentin. And since we thought our DS "only had regular OCD" for more than 6 years before discovering PANDAS played a role in his illness, it seems unlikely that NONE of the other kids currently enrolled in the NIMH study and currently taking (and responding well) to Riluzole have PANDAS.

 

I continue to be fascinated by the differences in the kids with and without tics, though, and their individual responses to the various PANDAS treatments. Now, it appears, perhaps Riluzole can be added to the list of those interventions that may hold a positive key for kids with OCD behaviors, but pose problems for those with comorbid concerns?

Edited October 22, 2010 by MomWithOCDSon

[MomWithOCDSon]

Yes, I too heard the same thing about Riluzole. That is why I was so anxious for my DD to try it. But the study included only individuals with pure OCD, no tics. I contacted the lead researcher at each of the sites after it happened (and also the pharmaceutical company to report it), but this was the first anyone had heard anything like this happening. But again, the participants did not have tics and they did not have PANDAS. My DD never had a problem with fish oil or taurine, but Riluzole set her down a very bad path. After this happened she became very reclusive and talked about not wanting to live. It was just heartbreaking. Thankfully she is a long ways away from that dark place.

 

Nancy

 

 

Also, Nancy, wanted to say so glad that your DD is now doing so much better. And her current diagnosis and treatment pose another question: who's to say what the lyme may have brought to the table in terms of her response to the Riluzole? It's possible, isn't it, that it wouldn't have posed a problem, even with tics present, were it not for the lyme? I mean, this stuff gets really complicated, so separating out the various potential causes and effects isn't necessarily clear-cut!

[melanie]

what was the dosage that you used were starting at 25 mg at night moving to 50mg

[NancyD]

That sounds about right, Melanie, but it was over two years ago so I don't really remember. I do know that we followed NIMH protocol.

 

Nancy

 

what was the dosage that you used were starting at 25 mg at night moving to 50mg

[NancyD]

Thanks Nancy. It's great having the PANDAS back in remission. Hopefully it will last.

 

It's hard to say at this point how Lyme enters into the equation. It really depends on when DD contracted it. If she contracted it within the past year as Dr. B seems to think (one of the horses she rides had Lyme), then it would not be part of the equation since she tried Riluzole in early 2008. But, if she contracted Lyme when she was younger or congenitally, then it could certainly have played a role. Wish there were a test to find out when she contracted it. I plan to test myself and hopefully I can rule in or out whether it was congenital.

 

Nancy

 

Yes, I too heard the same thing about Riluzole. That is why I was so anxious for my DD to try it. But the study included only individuals with pure OCD, no tics. I contacted the lead researcher at each of the sites after it happened (and also the pharmaceutical company to report it), but this was the first anyone had heard anything like this happening. But again, the participants did not have tics and they did not have PANDAS. My DD never had a problem with fish oil or taurine, but Riluzole set her down a very bad path. After this happened she became very reclusive and talked about not wanting to live. It was just heartbreaking. Thankfully she is a long ways away from that dark place.

 

Nancy

 

 

Also, Nancy, wanted to say so glad that your DD is now doing so much better. And her current diagnosis and treatment pose another question: who's to say what the lyme may have brought to the table in terms of her response to the Riluzole? It's possible, isn't it, that it wouldn't have posed a problem, even with tics present, were it not for the lyme? I mean, this stuff gets really complicated, so separating out the various potential causes and effects isn't necessarily clear-cut!

[melanie]

went to pick up the script and couldnt get it.Seems its 2,000 dollars and my insurance want to talk to the dr pre auth.So cant start until next tweek.bummer.I asked danny if he wanted to try it hes so cute he said what the heck ,cant hurt.Gotta love him. I hate to start a med when things are so good.Kindof just want to leave well enough alone ya know.But we still see him getting stuck in his own thoughts and that causes him some frusteration.

 

Funny though the phamisist said she has never dispenced this medication.She asked me what its for and when I told her she was like never heard of this being used for that,and that its probably not approved .

 

Melanie

[melanie]

bump