Rilutek for OCD

[Wilma Jenks]

Has anyone ever tried this medicine for the OCD?

[Williams_Mom]

My non-PANDAS kiddo has been taking Rilutek for his OCD for months now (8-10?) with great results. Obviously, I don't know how it would work for a PANDAS kiddo, but it's been great for my preemie/Tourettes/ADHD/OCD kiddo.

 

Sally

[Familyof5]

What is Riluteck?

[Haileymadison]

My non-PANDAS kiddo has been taking Rilutek for his OCD for months now (8-10?) with great results. Obviously, I don't know how it would work for a PANDAS kiddo, but it's been great for my preemie/Tourettes/ADHD/OCD kiddo.

 

Sally

 

 

Doesn't Tourettes + ADHD + OCD pretty much = PANDAS too?

[MomWithOCDSon]

What is Riluteck?

 

It's the brand name for riluzole, a glutamate antagonist drug currently approved by the FDA for ALS patients, and being used off-label and studied at the NIMH for OCD.

[MomWithOCDSon]

Not to hijack the thread, but if you're currently using riluzole/rilutek, does your insurance cover its cost? I've looked into it, and on a retail basis, it is extremely pricey! We're new to United Health Care (in Illinois), and since they've refused to cover Augmentin XR, I don't have very high hopes that they'll cover riluzole, should we decide to go that direction. Anybody have experience along these lines?

[MomWithOCDSon]

Sorry . . . another question. If prescribed rilutek, what dosage, and is it by weight, do you know?

[trggirl]

I remember that one of the moms on this site has tried it with her daughter and had bad results. I wish she would post again. It seems like it would be a good thing since it is a glutamate antagonist.

 

Williams mom, would you mind telling us a little more about your experience? Your son had tics and did well on it? Did it help the tics or OCD or both? Was it calming?

[NancyD]

Yes Trg Girl, my dd14 tried it for 3 months about 2 years ago. We followed NIMH protocol, did not see any results at all, and went off it very, very slowly. Very shortly after going off it DD developed a nystagmus and then full-blown motor and vocal tics. It was awful. My daughter could not control her body. She went into a deep depression and started isolating herself. We tried a couple different psyche meds and nothing helped. It was not until 10 weeks after doing HD IVIg that the tics went away. It was a very dark year for us and that was one medication I regretted trying.

 

Nancy

[rockytop]

we tried it very briefly and it seemed to work for her OCD- she refuses any meds now- but if she took any meds- i would push that one first!

we have CIGNA (we are in VA) and they paid for it

[Wilma Jenks]

Nancy-How is your girl doing today?

[NancyD]

Wilma,

 

Considering that my daughter has been diagnosed with autism, colitis, PANDAS, and an alphabet soup of other disorders beginning from age two, I think she's doing very well. She no longer shows any signs of autism (other than missing some very subtle social cues) and her colitis is completely cleared up. As far as PANDAS goes, her tics are 100% gone (and have been for ~2 years), her violent rages are gone, no more sleep problems, she is getting As and Bs instead of Cs and Ds, and she has "real" friends for the first time ever. Her primary issues now are severe anxiety and intrusive/obsessive thoughts, which she has had for only the past few years and seems to have gotten worse as the other PANDAS symptoms disappeared. We did find out in Oct that she is IgM positive for Lyme disease and was also IgG positive for Mycoplasma. She is in her 5th month of treatment for Lyme so it is too soon to see much in the way of results, except her brain fog, fatigue, and joint stiffness and pain are gone. I suspect she may have another co-infection as well (possibly Bartonella), but time will tell. Sorry, that's a long answer to your question. I would say the PANDAS seems to be in remission. And in case you're wondering, I do think one or more of the bacterial infections may have been at the root of her autism and colitis.

 

Nancy

[PatAnne]

Nancy and All,

 

My son (very similar story to Nancy minus lyme dx),was on rilutek for almost three years. It was actually only really great for the first 4 months.

In December after reading some very interesting articles about Baclofen, a drug that's been around for a very long time as muscle relaxant, we decided to switch from rilutek to baclofen. We had also just gotten a script for IVIG because my son had a very bad PANDAS episode but decided to see how the baclofen would work.

 

Well now, we have been THRILLED to see 97% of the OCD/anxiety is gone! It's been the best few months in so many years. The other good thing is it's affordable! We started at 1/4 tab 4x/day and slowly upped the dose to 1 1/4 tab 4 times per day (DS is 14 120 lbs).It is a drug that cannot be abruptly stopped.

 

I encourage anyone interested to look up the NYT articles and study details on baclofen/autism/fragx research at Seaside Theraputics in MA. They have had successful trials so far with a formula 10x the strenghth of baclofen in terms of blocking glutamate, so the new drug hopefully will be on the market in 2013. In the mean time, baclofen is gaining use off label for anxiety/OCD.

 

Best,

Patricia

 

 

Wilma,

 

Considering that my daughter has been diagnosed with autism, colitis, PANDAS, and an alphabet soup of other disorders beginning from age two, I think she's doing very well. She no longer shows any signs of autism (other than missing some very subtle social cues) and her colitis is completely cleared up. As far as PANDAS goes, her tics are 100% gone (and have been for ~2 years), her violent rages are gone, no more sleep problems, she is getting As and Bs instead of Cs and Ds, and she has "real" friends for the first time ever. Her primary issues now are severe anxiety and intrusive/obsessive thoughts, which she has had for only the past few years and seems to have gotten worse as the other PANDAS symptoms disappeared. We did find out in Oct that she is IgM positive for Lyme disease and was also IgG positive for Mycoplasma. She is in her 5th month of treatment for Lyme so it is too soon to see much in the way of results, except her brain fog, fatigue, and joint stiffness and pain are gone. I suspect she may have another co-infection as well (possibly Bartonella), but time will tell. Sorry, that's a long answer to your question. I would say the PANDAS seems to be in remission. And in case you're wondering, I do think one or more of the bacterial infections may have been at the root of her autism and colitis.

 

Nancy

[Wilma Jenks]

Has anyone had worse insomnia from the Rilutek?

[philamom]

Nancy and All,

 

My son (very similar story to Nancy minus lyme dx),was on rilutek for almost three years. It was actually only really great for the first 4 months.

In December after reading some very interesting articles about Baclofen, a drug that's been around for a very long time as muscle relaxant, we decided to switch from rilutek to baclofen. We had also just gotten a script for IVIG because my son had a very bad PANDAS episode but decided to see how the baclofen would work.

 

Well now, we have been THRILLED to see 97% of the OCD/anxiety is gone! It's been the best few months in so many years. The other good thing is it's affordable! We started at 1/4 tab 4x/day and slowly upped the dose to 1 1/4 tab 4 times per day (DS is 14 120 lbs).It is a drug that cannot be abruptly stopped.

 

I encourage anyone interested to look up the NYT articles and study details on baclofen/autism/fragx research at Seaside Theraputics in MA. They have had successful trials so far with a formula 10x the strenghth of baclofen in terms of blocking glutamate, so the new drug hopefully will be on the market in 2013. In the mean time, baclofen is gaining use off label for anxiety/OCD.

 

Best,

Patricia

 

 

Wilma,

 

Considering that my daughter has been diagnosed with autism, colitis, PANDAS, and an alphabet soup of other disorders beginning from age two, I think she's doing very well. She no longer shows any signs of autism (other than missing some very subtle social cues) and her colitis is completely cleared up. As far as PANDAS goes, her tics are 100% gone (and have been for ~2 years), her violent rages are gone, no more sleep problems, she is getting As and Bs instead of Cs and Ds, and she has "real" friends for the first time ever. Her primary issues now are severe anxiety and intrusive/obsessive thoughts, which she has had for only the past few years and seems to have gotten worse as the other PANDAS symptoms disappeared. We did find out in Oct that she is IgM positive for Lyme disease and was also IgG positive for Mycoplasma. She is in her 5th month of treatment for Lyme so it is too soon to see much in the way of results, except her brain fog, fatigue, and joint stiffness and pain are gone. I suspect she may have another co-infection as well (possibly Bartonella), but time will tell. Sorry, that's a long answer to your question. I would say the PANDAS seems to be in remission. And in case you're wondering, I do think one or more of the bacterial infections may have been at the root of her autism and colitis.

 

Nancy

Pat Anne- That's fantastic! Thank you for sharing.