Still cant get Riluzole

[melanie]

Insurace says its not FDA approved for OCD and its 1,000 dollars OOP.I know it has to do with Glutamate (sp) what else works simularly??HELP

 

Melanie

[Fixit]

Insurace says its not FDA approved for OCD and its 1,000 dollars OOP.I know it has to do with Glutamate (sp) what else works simularly??HELP

 

Melanie

 

don't know if this directs you anywhere...or if its way off base

 

 

http://www.ionchannels.org/showabstract.php?pmid=18695519

[NancyD]

Have you tried NAC?

[PatAnne]

I heard a neuro a few years back say riluzole was really similar to "super GABA" She said it worked in the same way and both were neuro-protective.

My son did amazing on riluzole for about 4 months then started to see some of the old behaviors return. It really made a difference in learning however.

 

PatAnne

[Phasmid]

Riluzole is an ALS medication with serious side effects. I think there are safer things to try before going to this.

[MomWithOCDSon]

What I can tell you is that if you were going to enter the Riluzole trial, one of the few supplements they would not allow you to continue to take is NAC (n-acetylsystein). There's lots of literature available regarding NAC and its glutamate agonist characteristics, so I'd try NAC.

[melanie]

I think I tried NAC before ,Ive tried everything,but holiday break is comming so maybe Ill try it again.What dosage ?Hes 135lbs 16 yrs old IVIG every 21 days 60 grams.

 

HELP

 

melanie

[Fixit]

I have really been researching vita c...just started family on hd....(liposoaml in the ratio)

some stuff for my self that i can see a marked difference..a gland infection that abx has not worked for, that i was probably goint to have surgery on next year...

 

you need at least 3x c per dose of nac

 

c helps you maintin glutithinone

 

http://www.ajcn.org/content/77/1/189.full

 

not saying this is answer for any or everyone..but interesting here so far...more so than OLE

[NancyD]

Amen. This caused serious motor and vocal tics in my DD. Took months and a HD IVIg infusion to undo what the Riluzole did. Scariest (and most depressing) time for my DD. If you haven't already, Melanie, I would also suggest IGX testing for LD and other co-infections. I never imagined my DD had Lyme but she did and this is the reason we had such difficulty eliminating her OCD and anxiety.

 

Nancy

 

Riluzole is an ALS medication with serious side effects. I think there are safer things to try before going to this.

[melanie]

Hi we did a lyme test and it came back (boderline) he gets IVIG every 21 days so all tets will be inaccurate.I started NAC today 600 mg Ill see what that does .I read some studies seemed promissing,we will see .

 

Thanks

Melanie