Nac/GABA

[melanie]

This is the only place I can get this answer. Please !!

 

Dans been taking nac for well over 2yrs. Recently I've stopped and I've noticed his tics have too.

he his misophonia (sound sensitivity ). I am confused. Nac is a glutamate agonist. ?? So if he's doing better off of it does that mean he's got to much or to little glutamate.

Also he's taking gabipentin a GABA medication. I'm confused with this. Help!

[peglem]

Hi Melanie! I have no idea about all of that. I just want tyo say "Hi" and nice to hear from you again!

[melanie]

I think about you and Allie a lot. Still doing ivig. 3yrs stuck on this nac / glutamate. GABA issue. Need clarity. For some reason I just don't get it. I need someone to draw me a picture. Ha

[MomWithOCDSon]

Hi Melanie!

 

If you do a search for "NAC" here on the forum, you'll see a thread or two about kids who do well with NAC and those who don't. LLM is better versed in this, but as I recall, there might be a link in terms of methylation and some of the genetic gene mutations that some kids have versus that that don't. Have you had genetic testing for Danny? That might give you some clues.

 

All the best!

[911RN]

My son did not seem to tic any more or less on NAC but he had definite newly formed anger control issues. We only used it for short time and stopped- anger went away with stopping medication.

 

Interestingly, my son has had this same vocal tic all summer-- a grunting throaty tic followed by a puffing sound with lips. This is about the only vocal he has had, little to no motor. It has been repetitive, relentless and drives me crazy although he is sooo totally unaware of doing it. I ran out of Fish OIl- use Omega 3 only and noticed this vocal tic went away. Did not replace fish oil in pill keeper this week and we are going on nearly 1 week to 10 days with no tic. Hhhmmm... I'm keeping him away from the Fish oil and see what happens.

[LNN]

Melanie,

You're right that NAC is a good glutamate modulator, but it also does other things. It's a great mucus thinner, so it can be used in lyme treatment to break down biofilms, which is a kind of slime many germs and viruses can hide in inside the body (tooth plaque is a biofilm). It can also boost the body's production of glutathione, which is the body's master antioxidant. So all good stuff.

 

But some people have a gene mutation (in a gene called CBS) that makes them intolerant of NAC for other reasons. When I took NAC for a chronic cough, it did a great job with the cough, but also made me depressed and raised my liver enzymes (my ALT and AST were in the 80s when normal is below 50). I stopped the NAC and my depression lifted and my liver enzymes dropped to the 20s. I have a CBS gene mutation and can't tolerate NAC or MSM or eggs or garlic (even thos I love garlic).

 

If Dan is doing better without the NAC, stopping it is obviously a first step. You can talk to his doctor about other glutamate agonists - isn't he on Namenda? If you're interested, there's affordable genetic testing you can do ($99) that will tell you if DAN has a CBS defect or other genetic defects that are getting in his way. But few doctors know what to do with the info and you usually need to do a lot of figuring it out on your own. It's made a big difference for my kids so I tend to go overboard on the topic. Peglem can probably give you a more balanced view of what testing and treating methylation issues might bring you.

 

911RN - my son can't tolerate Omega 3s and instead needs to supplement with evening primrose oil (a non-inflammatory Omega 6) due to his pyroluria. If you have a doctor willing to test for it (it's not mainstream), it made a huge difference for my son. Supplementing zinc and P-5-P and adding EPO made a huge difference for DS - like someone turned on a light in a dark room. His "woke up" in many ways. Pm me if you want any links or info on testing/treating,

[Mayzoo]

We did a test for neurotransmitters that spelled out kiddos glutamate/gaba levels for us. Your doc can order this from probably almost any lab. Our doc wanted to use Pharmasan labs for what ever reason.

 

http://www.pharmasan.com/testing.php?CatID=1&CatName=Neurotransmitters

[T_Anna]

My son also didn't do well on NAC or Fish Oil.

 

NAC was especially bad for DS, he was banging his head on the wall and still has some soft tissue in front if his skull. Take it slow and stop if things get worse.

 

T.Anna

[Chemar]

Hi Melanie

 

I just wanted to check if you are noticing any bad side effects from Gabapentin aka Neurontin?

 

Many of the patients refer to it as Neurotten due to the horrid side effects it can cause!

 

It is mainly used for epilepsy with some off label use for pain etc....just wondering why they have your child on it? rather than just a GABA supplement?

 

http://en.wikipedia.org/wiki/Gabapentin

http://www.rxlist.com/neurontin-drug.htm

[911RN]

Melanie,

You're right that NAC is a good glutamate modulator, but it also does other things. It's a great mucus thinner, so it can be used in lyme treatment to break down biofilms, which is a kind of slime many germs and viruses can hide in inside the body (tooth plaque is a biofilm). It can also boost the body's production of glutathione, which is the body's master antioxidant. So all good stuff.

 

But some people have a gene mutation (in a gene called CBS) that makes them intolerant of NAC for other reasons. When I took NAC for a chronic cough, it did a great job with the cough, but also made me depressed and raised my liver enzymes (my ALT and AST were in the 80s when normal is below 50). I stopped the NAC and my depression lifted and my liver enzymes dropped to the 20s. I have a CBS gene mutation and can't tolerate NAC or MSM or eggs or garlic (even thos I love garlic).

 

If Dan is doing better without the NAC, stopping it is obviously a first step. You can talk to his doctor about other glutamate agonists - isn't he on Namenda? If you're interested, there's affordable genetic testing you can do ($99) that will tell you if DAN has a CBS defect or other genetic defects that are getting in his way. But few doctors know what to do with the info and you usually need to do a lot of figuring it out on your own. It's made a big difference for my kids so I tend to go overboard on the topic. Peglem can probably give you a more balanced view of what testing and treating methylation issues might bring you.

 

911RN - my son can't tolerate Omega 3s and instead needs to supplement with evening primrose oil (a non-inflammatory Omega 6) due to his pyroluria. If you have a doctor willing to test for it (it's not mainstream), it made a huge difference for my son. Supplementing zinc and P-5-P and adding EPO made a huge difference for DS - like someone turned on a light in a dark room. His "woke up" in many ways. Pm me if you want any links or info on testing/treating,

Thanks for this tip...I'll look it up. See if it fits. I used to supplement with 3-6-9 Omegas then switched to just the 3's because I read something negative about the 6 and 9 for his status---can't even remember what it was now. To do with ticcing or OCD or something.

 

How much zinc, P-5-P, and ESO do you use?

[MomWithOCDSon]

Thanks for this tip...I'll look it up. See if it fits. I used to supplement with 3-6-9 Omegas then switched to just the 3's because I read something negative about the 6 and 9 for his status---can't even remember what it was now. To do with ticcing or OCD or something.

 

How much zinc, P-5-P, and ESO do you use?

I think that we were originally dissuaded from any Omega 6's because they were generally pro-inflammatory, rather than anti-inflammatory. However, there are a couple -- evening primrose oil (EPO) being one of them -- that are anti-inflammatory. Also, interestingly enough, EPO seems to be much less expensive than the better fish oil formulas I've found.

[JAG10]

Interesting GABA anecdote:

 

We just added GABA for the first time last week. NeuroScience test indicated low GABA, high glutamate. NAC did nothing good or bad for dd13. After 6 days, we noticed an interesting phenomena; she was more verbal, more robust vocabulary, more aware and alert (dh and I looked at each other both observing she was "managing" family business rather than being managed! She also noticed I gave her two compliments on being a great sister and that I had never done that before-which isn't true, but perception is reality.) Oh, and she took me to the cleaners in Quiet Storm surf shop- I've never seen her put together outfits like that or tolerate, let alone request to go shopping like that. She is usually completely intimidated by trendy teen stores and begs to leave.

Here comes the interesting part...she has been practicing for her high school entrance exams (HSPT), two sections a day, one verbal, one math/analytical. These are timed, standardized tests she's been doing everyday since returning from camp, so the variables are consistent...except for dd13 after day 6 on GABA. Her verbal raw score increased from mid-20's to a high of 39; but her math went from raw score 48-50 range down to 33, then 31. This has happened Friday, Sat and today.

Of note, I observed a similar phenomena when she was in 3rd grade and we tried Strattera for the first time. She was conversational and social like I had never seen before, but completely stumped by 3+0. For the past two years, she's been scoring in the 93-97%ile in math and quantitative standardized assessments, so this is really off her mark. I'm hoping I just need to give it time to "level out"???

[LNN]

JAG - you had me ready to grab my credit card and call 1-800-get-gaba - until the end of your story. You know I'll be following your story closely! What dose of Gaba? Would a lesser dose, or a split dose given more often, be worth trying? Fingers crossed for you - and keep me posted!

 

As a side note, we'd talked about ashwaganda - and I wasn't sure it was helping my DD with her insomnia. So I stopped it last week. Lo and behold, her insomnia is back. So I've restarted but it may take another week before I'll know if adding it back helps. So if the gaba ends up working for you "too well", becking down Dr O's list of things to try might be worth reconsidering. We're using it for insomnia, not glutamate, but just a thought...

[JAG10]

She said 2000mg of GABA and didn't specify when to take it. I'm giving her 1500mg in the morning and 750mg in the evening, which I realize is 2250, so maybe it is too much, idk. I'll let you know what she says.

[melanie]

Thanks everyone. I knew this forum would be my only answers. But I have more questions. Haha. He takes dapakote ( which according to his Neuro somehow has GABA and gSbaprntin). How do I know how much he's getting of just GABA. I want him off the depakote. But I definitely think the gabipentin is helping. His psychiatrist prescribes it for anxiety. 1,200 mg day.