Melanie -- This is for you

[MomWithOCDSon]

I don't know how I missed this in all my previous research regarding n-acetylcystein (NAC), but I just came across this clinical trial currently underway at Yale.

 

Yale NAC Trial

 

What interests me most is the dosage, since many of us here have kicked around "how much" we should be considering adding to our kids' regimens. Now, this dose is for 18 and over, based on the requirements of the trial participants, but as many of our kids are "adults" in terms of weight anyway, this at least gives one something to go on.

 

I'd also like to add that we just found and began to use a time-release form of NAC by Jarrow; had never seen it before, but it's still in 600 mg. capsules, but they're coated and double-layered. Our DS14 is 140 lbs. and we've been giving him 2,400 mg. daily (1,200 mg. in each of morning and night), but based on this trial, I'm considering kicking in another 600 mg. capsule daily and see if it helps. We hit a bump a couple of weeks ago and could use some more OCD leverage.

 

Be interested to hear any other experiences with NAC.

[EmersonAilidh]

What exactly is NAC? Hope adding the extra 600 mg helps! <3

[MomWithOCDSon]

What exactly is NAC? Hope adding the extra 600 mg helps! <3

 

Thanks!

 

NAC is N-acetylcystein, an amino acid that's supposed to help with glutamate modulation in the brain. Glutamate is thought to be a factor in OCD. Melanie, myself and a few others here have been trying it in conjunction with helping our kids with their OCD behaviors.

[trggirl]

Please update Nancy on what ever you decide! I can't wait to see results from this study!

[Phasmid]

my son was on it for a while, 600 mg, for trichotillomania (Yale is doing a trial for this in kids presently) with no obvious beneficial results. It makes my son's encopresis worse, as I think it contributes somehow to constipation. Not sure yet. Neurologist has tried this in her ped. patients with little benefit for ocd. We quit giving it. Gonna wait until I learn more about the trial dosage (i think was 1200?)

[MomWithOCDSon]

my son was on it for a while, 600 mg, for trichotillomania (Yale is doing a trial for this in kids presently) with no obvious beneficial results. It makes my son's encopresis worse, as I think it contributes somehow to constipation. Not sure yet. Neurologist has tried this in her ped. patients with little benefit for ocd. We quit giving it. Gonna wait until I learn more about the trial dosage (i think was 1200?)

 

Maybe the trial dosage for kids was 1,200 mg.

 

But this study, for 18 and over, sets the dosage at 3,000 mg.: 1,800 mg. in a.m. and 1,200 mg. in p.m.

[melanie]

Im so happy you posted this THANK YOU!!!!

 

I have been following this study and Danny gets 1,200 mg .Igive him 600 mg am 600pm .I amgoing to up it because I totally see a difference.He had back pain this am and I want to make sure its not the NAC .I would love to be a part of the study and started using it because my insurance turned me down for the precription the MD ordered.I didnt realize it was 3,000 mg.I also read I need to add Vit C ?

Melanie

[Guest TwinCitiesMom]

Our DS 14 has been taking NAC since 9/15/2010. His dose has been between 2000mg and 3000mg per day. Of course, we have no way to know for sure, but it seems the NAC has helped with his OCD. He has had 2 pandas exacerbations since 9/10 and his OCD has never gotten close the level it was in the summer. He still has substantial anxiety, but ocd is fairly manageable. Germ fears and contamination fears have pretty much faded to barely there. We measure this by how often he showers, how often we have to replace the soap dispensers, and if his hands are chapped. We can also measure the ocd by the level of hesitation before picking something off the ground. At his worst, his hands were cracked and bleeding, he was showering upwards of 5 times a day, handwashing constantly, and would not/ could not pick up something off the ground. At his worst, he was convinced he had rabies, lyme disease, cancer, lead poisoning, blindness, poisonings, etc, etc. He was worried about EVERYTHING. So maybe it has helped, hard to know for sure. I am glad there are studies underway.

[MomWithOCDSon]

It's great to hear the positive stories, and balancing to hear the less-positive ones. We generally figure, if it won't hurt and might help, then it's worth a try.

 

Melanie, I think that Yale study is still open, but I've been thinking about contacting the researcher myself to see what preliminary results look like. Sometimes they'll talk to you "off the record" about that stuff, and sometimes they won't. I'll be sure to post if I find out anything.