Has anyone tried Rilutek for their child?

[PhillyPA]

My son's pandas doctor suggested that in the future we might try Rilutek. Has anyone had their child on this drug? What was your experience?

[melanie]

Hi

 

My Psy gave us a script for it but my insurance wouldnt cover it.They cover ivig every 21 days but not rilozole(generic) Its expensive 1,000 a script so we didnt try it.We did start NAC which is the same sort of idea.I think its helping alot ,his obsessive thoughts are 1/2 of what they were and I havent seen any side effects at all.I dont remember who suggested it on this board but i am very greatful..

 

Melanie

[rockytop]

Our PANDAS doc prescribed it for my daughter and I think it worked great. Unfortunately, she only took it once a day (it was ordered BID) and only about 4-5 x week. Taking meds is one of her OCD issues. However, even with that weak attempt at trying it- I felt it was very helpful! Now, she refuses to take it (or anything) If your ins will pay for it and you doc thinks it may work, it is certainly worth a try. I would love for my daughter to try it again. In fact- I am getting a refill today and going to put it out for her again. She ahs not taken it since beg of December- so here's hoping! You can PM if you want any more info.

I did have to try to several pharmacies to find one that had it (Walgreen's did) and also the pharmacist was a little concerned that it was the corect script- as I imagine not too many 12 yo's need an ALS medication (thankfully). Also- he had actually never filled a script for it before! Give it a try.

[melanie]

what insurance do you have?I have bcbs benicard Im a teacher and I couldnt get it covered even after 3 letters from dans Psy

[NancyD]

We had a horrible experience with it. We followed NIMH protocol and DD was on it for 3 mos. We saw no change whatsoever and decided to take her off it very slowly. Unfortunately it triggered an overnight onset of full-blown vocal and motor tics. Even after 3 mos they did not improve. It was only after we did HD IVIg that the tics disappeared completely.

[Guest fr88]

We had a horrible experience with it. We followed NIMH protocol and DD was on it for 3 mos. We saw no change whatsoever and decided to take her off it very slowly. Unfortunately it triggered an overnight onset of full-blown vocal and motor tics. Even after 3 mos they did not improve. It was only after we did HD IVIg that the tics disappeared completely.

 

 

Nancy- didn't you say your daughter was diagnosed with regular OCD that was controlled well with SSRI's? Furthermore, I still don't understand how getting OFF a drug could possibly cause that type of reaction. Usually its when starting something new that you see something negative. If HDIVIG improved your daughter, wouldn't that indicate an immune problem and not a reaction to rilutek? Could it have been just a weird coincidence?

[NancyD]

No, that was not my daughter. She was never diagnosed with OCD and she has never reacted well to any SSRI. Her scrupulosity was definitely tied to PANDAS and/or Lyme. Perhaps other Nancy? I consulted with several doctors about this and they were not at all surprised by the reaction she had -- particularly Dr. Latimer. Rilutek works on the glutamate and going off it clearly triggered the reaction. I was careful for the 3-month period to not try anything new. And the infusion definitely cleared up the tics without question. Again, we did nothing new other than IVIg infusion during that 10-week period. Both the tics and violent rages disappeared at the same time. Not a coincidence.

 

We had a horrible experience with it. We followed NIMH protocol and DD was on it for 3 mos. We saw no change whatsoever and decided to take her off it very slowly. Unfortunately it triggered an overnight onset of full-blown vocal and motor tics. Even after 3 mos they did not improve. It was only after we did HD IVIg that the tics disappeared completely.

 

 

Nancy- didn't you say your daughter was diagnosed with regular OCD that was controlled well with SSRI's? Furthermore, I still don't understand how getting OFF a drug could possibly cause that type of reaction. Usually its when starting something new that you see something negative. If HDIVIG improved your daughter, wouldn't that indicate an immune problem and not a reaction to rilutek? Could it have been just a weird coincidence?

[Guest fr88]

No, that was not my daughter. She was never diagnosed with OCD and she has never reacted well to any SSRI. Her scrupulosity was definitely tied to PANDAS and/or Lyme. Perhaps other Nancy? I consulted with several doctors about this and they were not at all surprised by the reaction she had -- particularly Dr. Latimer. Rilutek works on the glutamate and going off it clearly triggered the reaction. I was careful for the 3-month period to not try anything new. And the infusion definitely cleared up the tics without question. Again, we did nothing new other than IVIg infusion during that 10-week period. Both the tics and violent rages disappeared at the same time. Not a coincidence.

 

We had a horrible experience with it. We followed NIMH protocol and DD was on it for 3 mos. We saw no change whatsoever and decided to take her off it very slowly. Unfortunately it triggered an overnight onset of full-blown vocal and motor tics. Even after 3 mos they did not improve. It was only after we did HD IVIg that the tics disappeared completely.

 

 

I don't understand why Rilutek is being studied actually, it's not the root cause of PANDAS. The root cause is an immune dysfunction. Vitamin E does the same thing as riluzole and it's a whole lot safer. Plus there was a study on it with rheumatic chorea which is related to PANDAS. http://www.springerlink.com/content/x1213kl576752755/

If you are looking for a band aid- why not just use vitamin E

 

 

Nancy- didn't you say your daughter was diagnosed with regular OCD that was controlled well with SSRI's? Furthermore, I still don't understand how getting OFF a drug could possibly cause that type of reaction. Usually its when starting something new that you see something negative. If HDIVIG improved your daughter, wouldn't that indicate an immune problem and not a reaction to rilutek? Could it have been just a weird coincidence?

[rockytop]

We have CIGNA insurance.

Ordered by neuro and they covered it no problem. i am so sorry you are having trouble,

 

FYI

we went to a very wonderful integrative doc/ LLMD who had my child on NAC for a long time and I think it was definitely helpful- that was over a year ago and If you cannot get rilutek without going broke-- give that a try.

[peglem]

We have CIGNA insurance.

Ordered by neuro and they covered it no problem. i am so sorry you are having trouble,

 

FYI

we went to a very wonderful integrative doc/ LLMD who had my child on NAC for a long time and I think it was definitely helpful- that was over a year ago and If you cannot get rilutek without going broke-- give that a try.

Do you find the rilutek more effective than the NAC?

[rockytop]

Hard to tell for sure if NAC or rilutek was better. I think that rilutek was better- as my daughter was at a much higher level of OCD dysfunction when she started taking it- as opposed to when she took NAC. However at the time of the NAC- she was on a very extensive lyme protocal - so who knows what helped. When she was taking the rilutek- she was taking nothing else- due to her refusal- and there was a noticeable decrease in her symptoms.

The OCD was definitely interfering with her function when she took the NAC in 2009 (most of the year) but she was functioning generally.

So , again, hard to be sure, but I really think the riluzole was better.