GABA Plus and IVIG

[Suzan]

dd8 who had her first IVIG (low dose .4 mg/kg) in April is being scheduled for her next IVIG in the next couple of weeks. Our doc said since she handled it well and showed improvement he will move her up to the next dose which is .75 mg/kg. I am nervous of course.

 

dd7, who is having issues with hoarding and food restriction due to fear of choaking and a few other OCD issues I think needs IVIG too. But before we go there, he wants me to try GABA Plus. It's a combination of GABA, L-Glycline, Insitol and Taurine. She's taken GABA and Taurine before but never the other two. He said that if this works, we will see an improvement within 3 weeks. If not, she can have IVIG (starting low dose and working our way up).

 

Has anyone taken this product? I know I've seen discussions of the individual things.

 

Susan

[LNN]

dd7, who is having issues with hoarding and food restriction due to fear of choaking and a few other OCD issues I think needs IVIG too. But before we go there, he wants me to try GABA Plus. It's a combination of GABA, L-Glycline, Insitol and Taurine. She's taken GABA and Taurine before but never the other two. He said that if this works, we will see an improvement within 3 weeks. If not, she can have IVIG (starting low dose and working our way up).

 

I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg.

 

IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error).

 

He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy?

[Suzan]

dd7, who is having issues with hoarding and food restriction due to fear of choaking and a few other OCD issues I think needs IVIG too. But before we go there, he wants me to try GABA Plus. It's a combination of GABA, L-Glycline, Insitol and Taurine. She's taken GABA and Taurine before but never the other two. He said that if this works, we will see an improvement within 3 weeks. If not, she can have IVIG (starting low dose and working our way up).

 

I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg.

 

IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error).

 

He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy?

 

Mostly I'm placating him, I don't think it's going to work. But he has a theory that if it's immune related, it won't work and if it's not immune related but brain chemical it will work. I think he's mostly doing it for the insurance company to tell you the truth since I do believe he believes she has pandas. I'm OK with the 3 week wait to give it a try.

 

Susan

[Suzan]

So I'm still confused about all this..... in the week that I waited for the GABA Plus to come, dd7 started on an upswing and started doing much better. I've worked her up to the dosage our neuro wanted and she's continuing to do well. I don't feel like it's a good representation on how she's responded to the supplement though.

 

What would you do? I'm thinking to tell the doc what hapened and keep her on the GABA Plus and wait for the next episode. Assuming that we can do IVIG if she ramps up while on it. And if she never ramps up, I just keep her on the abx and GABA forever? That's the part I'm confused about, if she has pandas and our insurance pays for IVIG, shouldn't I push for that? I'll call the neuro soon and see what he says. I guess I'm confused about IVIG vs managing symptoms with supplements like LLM says.

 

Susan

[laurenjohnsonsmom]

Laura,

 

I'm confused. Didn't your family treat with steroids (not bursts as in "aiding in clinical diagnosis") but steroid treatment to alleviate symptoms for a long period of time? (I might have you confused with other posts here).

 

If so, is that not the "band-aid approach"? Did you ever do IVIG? If so, how did it go?

 

Lynn

 

dd7, who is having issues with hoarding and food restriction due to fear of choaking and a few other OCD issues I think needs IVIG too. But before we go there, he wants me to try GABA Plus. It's a combination of GABA, L-Glycline, Insitol and Taurine. She's taken GABA and Taurine before but never the other two. He said that if this works, we will see an improvement within 3 weeks. If not, she can have IVIG (starting low dose and working our way up).

 

I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg.

 

IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error).

 

He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy?

[LNN]

Laura,

 

I'm confused. Didn't your family treat with steroids (not bursts as in "aiding in clinical diagnosis") but steroid treatment to alleviate symptoms for a long period of time? (I might have you confused with other posts here).

 

If so, is that not the "band-aid approach"? Did you ever do IVIG? If so, how did it go?

 

Lynn

 

My post to Suzan was that it sounded off-base for a doctor to use a response to a supplement as a guide to whether to proceed with IVIG. To me, it's the same as saying if your child responds to an SSRI, we won't do IVIG. (with her follow-up post I now understand where he's coming from, but some Pandas kids are helped somewhat by SSRIs but they still have Pandas and still benefit from IVIG, so I'm not sure a positive response to GABA means there's no immune stuff going on).

 

In my experience, the prednisone taper halted the auto-immune response, so I think of a taper, in conjunction with antibiotics, as a treatment option. It ended the episode and gave us complete remission for a significant period of time. For my son, it wasn't a band-aid. I personally don't feel supplements, SSRIs or ibuprofen are able to do this by themselves. That doesn't mean they aren't helpful. Just not something I would feel comfortable using as an indicator for IVIG.

 

It's only 3 weeks post-ivig, so too soon to post anything on that.

 

Suzan - in response to your most recent post - I'm under the impression that IVIG is most helpful when done during an exacerbation. If your daughter is doing better, it may be best to wait until she's in an episode. But someone else may have better info on this. I think you're also talking about low dose IVIG? And I know very little about that. Sorry.

Edited July 7, 2010 by LLM

[kimballot]

Suzan - thanks for sharing this. I've not seen anyone post about "gaba plus" before... Is there anyone else out there using it? I am looking for something to help get us throuth the winter as we cannot change insurance until January to even start thinking about IVIG.

 

Anyone else with any experience with GABA plus?

[Suzan]

Suzan - thanks for sharing this. I've not seen anyone post about "gaba plus" before... Is there anyone else out there using it? I am looking for something to help get us throuth the winter as we cannot change insurance until January to even start thinking about IVIG.

 

Anyone else with any experience with GABA plus?

 

I'm a little confused about the product because there seem to be two or more out there, one like you see below and another that has herbs in it http://www.greatestherbsonearth.com/nsp/gaba_supplements.htm.

 

The one I got from the place the neuro suggested (not sure the brand off hand) has what you see below plus taurine. So there seems to be multiple products called gaba plus. If I notice any improvement that I attribute to it I will be sure to post again.

 

Twin Labs Ingredients Amount %DV

--------------------------------------------------------------------------------

Inositol 3000 mg

Niacinamide 1000 mg

GABA 500 mg

--------------------------------------------------------------------------------

Other Ingredients: Gelatin, Purified Water, MCT, Silica, Magnesium Sterate.

[Suzan]

Suzan - in response to your most recent post - I'm under the impression that IVIG is most helpful when done during an exacerbation. If your daughter is doing better, it may be best to wait until she's in an episode. But someone else may have better info on this. I think you're also talking about low dose IVIG? And I know very little about that. Sorry.

 

Thanks, that helps, we are doing low dose though. I know I need to call the neurologist and ask all these questions.

 

Susan

[peglem]

So I'm still confused about all this..... in the week that I waited for the GABA Plus to come, dd7 started on an upswing and started doing much better. I've worked her up to the dosage our neuro wanted and she's continuing to do well. I don't feel like it's a good representation on how she's responded to the supplement though.

 

What would you do? I'm thinking to tell the doc what hapened and keep her on the GABA Plus and wait for the next episode. Assuming that we can do IVIG if she ramps up while on it. And if she never ramps up, I just keep her on the abx and GABA forever? That's the part I'm confused about, if she has pandas and our insurance pays for IVIG, shouldn't I push for that? I'll call the neuro soon and see what he says. I guess I'm confused about IVIG vs managing symptoms with supplements like LLM says.

 

Susan

Well, I think its great if the abx and Gaba Plus keeps her in remission. I''ve been doing a lot of reading on taurine lately, and I think its more than a bandaid...really amazing stuff- anti-inflammatory, antimicrobial. There are even studies of it being used intravenously instead of chemo to destroy tumors in some kinds of cancers-w/o damage to healthy tissues.

 

But, also, there are no guarantees that IVIG will put an end to your daughter's PANDAS. I tend to just hold steady when my child is doing well.