Glutathione I.V.'s

[Sylvia]

Anyone doing glutathione I.V.s for their P.A.N.D.A.S. kid? I had read about it being helpful over on the Lyme forum, and it is a well known therapy in the autism biomed world. And a member of another group I belong to has recently posted great results with her Aspie/PANDAS son, so good in fact he lost his autism diagnosis and his PANDAS symptoms are in remission.

 

We have done glutathione I.V.s here and there over the last couple of years, but these latest reports has convinced me to put my son on a regular schedule. He now has one twice a week, and asks for them everyday. It has only been two weeks on the new schedule, but the last week has been very good.

 

Anyone else doing these? He gets 1000mg of gluathione twice a week and is a little under 90 lbs.

[trggirl]

Sylvia, I have been wondering about glutathione. I read that glutathione is a potent antioxidant. I also read that oxidating agents might activate CamKII. So I was thinking that maybe glutathione might help lower CamK by acting as an antioxidant and inhibiting CamKII?? Anyway, I am probably completely off base but I found it interesting. Please keep us updated.

[norcalmom]

can you test glutathihione levels?

[NancyD]

Yes, you can test glutathione levels and you should. I think that should be done as part of the basic testing. My DD's levels were very low when she was little. We did glutathione IVs every month for 2-3 years and that cleared up her severe colitis. Prior to that she could not eat any gluten, casein, or soy. Even a tiny cross-contamination would give her severe diarrhea and put her on the ceiling (out of control behavior). The glutathione IVs cleared up her gut issues and she is no longer on a restricted diet (except for no dyes and additives). Now we only do glutathione/NAC IVs when we see our Dan doctor, which has not been all that often in the past few years. Her levels are no longer low so I don't worry about doing the IVs often.

[Sylvia]

And we have done some genetic testing that showed Nick is GSTM1 Null, meaning he is missing that enzyme GSTM1 that is one of the enzymes that produce glutathione. So he is naturally low. That is one of the reasons for his severe autism. I have two boys with autism. The oldest was showing signs about the time Nick was born, so I was scared and wanted to make sure I did everything by the book - so I followed doctors orders to the "T", which I didn't do with my oldest son. The pediatrician always told me to give Tylenol before and after each vaccination with the kids as a precaution. I never did that with my oldest because I was never the type to give medication if it wasn't needed. But with my youngest I wanted to make sure I did everything "right" so he got boat loads of Tylenol just like the doctor recommended.

 

The result? My youngest is MUCH more severely autistic than his older brother. I know NOW that Tylenol is a huge glutathione depleter. Giving Tylenol to someone that is being injected with mercury and aluminum, and who also is naturally low in glutathione, is the proverbial recipe for disaster. The body needs glutathione to detoxify poisons and heavy metals, so if you take away their ability to detoxify, they are poisoned. They can't rid themselves of the poison.

 

And it is amazing how much he asks for the glutathione I.V.s now. Every morning he wakes up and points to the crook of his arm. A week or so back there was a discussion here on how hard I.V.s/blood work can be with our little ones, and boy OH boy, was Nick a toughie back in the day. Now he is a dream. The nurse at the busy clinic we go to now says that Nick is his easiest client to start an IV on. He is so calm and happy to have that needle now! It is expensive, $200 a week with no insurance reimbursement, but SO worth it!

 

 

Yes, you can test glutathione levels and you should. I think that should be done as part of the basic testing. My DD's levels were very low when she was little. We did glutathione IVs every month for 2-3 years and that cleared up her severe colitis. Prior to that she could not eat any gluten, casein, or soy. Even a tiny cross-contamination would give her severe diarrhea and put her on the ceiling (out of control behavior). The glutathione IVs cleared up her gut issues and she is no longer on a restricted diet (except for no dyes and additives). Now we only do glutathione/NAC IVs when we see our Dan doctor, which has not been all that often in the past few years. Her levels are no longer low so I don't worry about doing the IVs often.

[amyjoy]

Hello!

 

my son has also had glutathione, had low levels as well as methylation problems, which are greatly aided by B6/B12/Folate (especially in the methyl forms). glutathione and methylation assist in core pathways that chemicals can travel through the liver to be broken down, including ammonia that can build up and create anxiety and other neuro issues.

 

in our office, we do infuse glutathione IV (push using a syringe) and its not very expensive and take 10 minutes. its also possible to use glutathione in an oral powder form or even a spray. some kinds of oral glutathione are not absorbed well, some are at least decent and so can be useful if IV access is hard, or cost prohibitive.

 

also, like nancy d was saying, NAC (orally) can help the liver produce glutatione, it is a precurser, and so is lipoic acid. it helps if the child has lots of b vitamins and minerals in them as well, to help the liver pathways. I'd be happy to share any information about this.

 

good luck out there.

amy

[purple66p]

I take N-acetylcysteine, which is a precursor to glutathione, for depression and it seems to help. It's actually a methyl-B12, Methylfolate, NAC supplement called CerefolinNAC. It is my understanding that glutathione is not well-absorbed directly (thus the shots, I guess.) I was told to add Vitamin C to reduce the chance for kidney stones.

 

My son takes a B12/B6/Folate/D supplement in a rub-on cream form, but I haven't added NAC to his regime yet. I'm guessing his dose would be the same (he's 120 lbs) as mine, which is 600 mg.

[mama2alex]

We aren't doing the IV's, but have our son on transdermal glutathione now. He was taking the liquid, which is cheaper, but he hated the taste and I was worried about absorbtion. We added this based on testing - he was quite low.

 

I agree that every child with PANDAS/PITAND symptoms should be tested for glutathione levels. We took our son off glutathione (and a number of other supplements, although not all) just after he turned 8 and less than a year later he had PANDAS. I'll never know what the correlation is, but I'm suspicious.

[NancyD]

Glutathione is crucial to the immune system and for ridding the body of toxins, so there is a definite correlation. Many children with ASD, ADHD, Bipolar, and I bet PANDAS have kow levels of glutathione.

 

We took our son off glutathione (and a number of other supplements, although not all) just after he turned 8 and less than a year later he had PANDAS. I'll never know what the correlation is, but I'm suspicious.

[Fixit]

I take N-acetylcysteine, which is a precursor to glutathione, for depression and it seems to help. It's actually a methyl-B12, Methylfolate, NAC supplement called CerefolinNAC. It is my understanding that glutathione is not well-absorbed directly (thus the shots, I guess.) I was told to add Vitamin C to reduce the chance for kidney stones.

 

My son takes a B12/B6/Folate/D supplement in a rub-on cream form, but I haven't added NAC to his regime yet. I'm guessing his dose would be the same (he's 120 lbs) as mine, which is 600 mg.

 

i looked up cerefol....as it seems really interesting in maybe addressing ds allergies with the Bs and the nac that may address ds' trich which kicks in the last 2 seasons during allergy time..

and to be able to addres it all in one pill would be awesome!!!!

 

i'm a little concerned about some of the ingredients...of course nothing is w/o risk..

 

can i ask who prescribed you the cere....

what dose? it's one pill that contains 600mg nac...what are other ingredient measures...

is there a particular reason you are taking it...

do you have any other sites that talk about its use other than for memory loss or alzhiemers..

[kmom]

Thank you all for this valuable info! Going to call Dr. to get script tomorrow to test kids' Glutathione levels. Both had milk allergy as infants. My DS was super severe from milk and soy. He had severe ulcerative colitis. Maybe gluathione is a missing puzzle piece here. I've focused on their history w/ milk/soy protein intolerance as infants but no PANDAS docs have mentioned glutathione. I just met a local DAN Dr. I bet he'll be able to help me out with questions. Thanks again!!!

[purple66p]

Fixit: I got it as a prescription from my psychiatrist. They have another product called Deplin which is for depression. It has only 7.5 mg methyfolate. The CerafolinNAC is:

2mg Methylcobalamin

5.6mg L-methylfolate

600mg N-acetylcysteine

 

From their website: "Up to 70% of those with depression may have a compromised ability to break down folic acid into L-methylfolate, the only form of folate that can be used by the brain to make serotonin, norepinephrine, and dopamine."

 

I think you could probably put it together yourself if you don't want to go the prescription route. I used to get methylfolate from a pharmacy (a local one that has lots of good supplements and is also our compounding pharmacy.) Be sure to look for methyfolate; it is different and more usable than folic acid. Methylcobalamin is B-12, again in a more absorbable form. My son's doc also adds B6 is P5P form; I haven't added that to my regime yet, but I probably should. I have no doubt that my son inherited his methylation problems from me.

CJ

[philamom]

Can this test be done through standard labs?

[NancyD]

Yes.

 

Can this test be done through standard labs?

[Sylvia]

And besides being GSTM1 Null, Nick also has defects (which are not uncommon in the general population either) in his folate genes: MTHFR, which break down folic acid into the form the body can utilize. There are several over the counter folate supplements that have the form of folate that is already broken down, 5-MTHF. One brand is called FolaPro:

 

http://www.metagenics.com/products/a-z-products-list/FolaPro

 

And there are a couple of other brands as well. They usually only come in strengths between 800mcg and 1000mcg, vs. the prescription strengths that come in 2.5mg and up. (2.5mg = 2,500mcg)So only a quarter strength, but no prescription needed. But if you can get a doctor to prescribe it, then you would have it covered by insurance, which would be nice.