MTHFR....

[philamom]

Ok, I'm going to have go back and read all these MTHFR posts. I am heterozygous for the A1298C mutation and negative (normal) for the C677T mutation. I guess this is more evidence that I should have my daughter tested as well? husband too? thanks.

[smartyjones]

Ok, I'm going to have go back and read all these MTHFR posts. I am heterozygous for the A1298C mutation and negative (normal) for the C677T mutation. I guess this is more evidence that I should have my daughter tested as well? husband too? thanks.

 

 

awesome phila -- me too! i can't find too much info -- a1298c doesn't seem as discussed or researched as c677t. surprised to see my pandas ds is neg for all mutations. there does seem to be some realtion btween a1298c and b12. my neurologist tested me for this b/c i asked while she was doing other blood work. she is blowing off result but also found me low on b12 and is giving me shots (i see her for migraine headaches). so i kind of feel i'm sort of doing something about it while trying to figure our what to do.

 

please let me knwo what you discover.

[SSS]

Hi-

My dd is double A1298c-

so I see where it can say trouble with dopamine and seratonin (meaning not enough)

But I had a neurotransmitter test done on her, and her dopamine was so high off the charts, AND seratonin,

our Dr. at the time was alarmed, and made a special call to me.

Now, some may not put stock into that test (urine) and,

my dd does seem to go against the grain on tests,

but...it made sense to me that this was/is true for her.

 

The A1298c has always somewhat eluded me- and since she is double, I have tried to look hard at it.

Years ago I tried supplementing with methyl B-12, we had horrible backlash, like she was on crack. I tried more than once-

Over the years of special diets and much supplementation, I really do feel at this point she is not deficient - although still gets a high quality multi vitamin every day.

 

I understand the MTHFR mutation having to do with detox, producing glutathione end product, which is the 'mecca' of what the body produces/needs to stay healthy.

I always tried and incorporated detox methods with her over the years.

 

The other thing with A1298c is ammonia - body producing too much- from proteins. You can test for high ammonia, and a natural supplement to help bring it down is Yucca root.

I still give my dd digestive enzymes with each meal- partly because I took her off GF/CF after 2 years, and, I think it does help-

I have starting taking 1 before dinner (a meat meal, I have at least 1 gene of A1298c) and it helps digest...

 

Ramblings.

[smartyjones]

I understand the MTHFR mutation having to do with detox, producing glutathione end product, which is the 'mecca' of what the body produces/needs to stay healthy.

I always tried and incorporated detox methods with her over the years.

 

The other thing with A1298c is ammonia - body producing too much- from proteins. You can test for high ammonia, and a natural supplement to help bring it down is Yucca root.

I still give my dd digestive enzymes with each meal- partly because I took her off GF/CF after 2 years, and, I think it does help-

I have starting taking 1 before dinner (a meat meal, I have at least 1 gene of A1298c) and it helps digest...

 

no -- i love ramblings!! where did you do the neurotransmitter tests? did you treat the high dopamine and seratonin nutritionally? what digestive enzymes do you use? i also have recenlty taken ds off gf/cf -- slowly at first but now pretty much everything.

[SSS]

If you google 'neurotransmitter testing' you will see a few places to get it-

We had it done through our last LLMD.

It will give you a recommendation for natural supplements through (made by) Neuroscience

depending on the results

(like: 5-HTP, Kaviance, etc.)

I did try the supplements recommended, $, to no effect and made worse.

This doesn't happen for everyone!

So I did, after years of not, resort to a prescription med prescribed by another physician -

we were in a dire place,

and it has helped.

 

I happen to use Trienza digestive enzymes, it has many different enzymes to help break down proteins, carbs, stalactites.

[norcalmom]

But I had a neurotransmitter test done on her, and her dopamine was so high off the charts, AND seratonin,

our Dr. at the time was alarmed, and made a special call to me.

 

Most pandas kids have high Dopamine - I forget which its either D1 or D2 - Cunningham tests for these two along with the Cam K II, and two anti-neuronals (Anti-lysoganglioside and Anti-tublin). These levels fluctuate. During exacerbation one or more of them is usually very very high, and post IVIG - return to normal or close to normal. So if you are testing for Dopamine (and others) realize it goes up and down. This is why I decided to have DS do his Cunningham test when he was at baseline, with almost no symptoms. I didn't want to treat something that was only there when in exacerbation. Although, Cunningham's lab recommended doing the tests when in exacerbation - because they said more likely to be higher and show abnormalities.

 

Thanks for this post and all the info to those that have contributed. I may have DS tested - since it may contribute to his general health, and immune health. Anything I can do to help keep him from illness (which in his case may =exacerbation) and help his body overcome his chronic mycoplasma, I'm willing to investigate.

 

I guess its time to see if he has the MTHFR.

[Christianmom]

What is the complete name of the panel that includes this please?

 

Nancy

 

It is a Labcorp test called "MTHFR DNA Analysis," (test #511238). Dr. T is familiar with it and will order it for you.

[philamom]

What is the complete name of the panel that includes this please?

 

Nancy

 

It is a Labcorp test called "MTHFR DNA Analysis," (test #511238). Dr. T is familiar with it and will order it for you.

I had it done through Quest- is there a difference?

[tpotter]

I would definitely test for c-diff, giardia, and h-pylori. Sounds like there's a lot of gut issues. BTW, PANS stands for: Pediatric Acute Onset Neuropsychiatric Syndromes, and it is an umbrella for PANDAS and PITANDs. It includes infection and environmental triggers, which may explain your child's symptoms. I would also check for lyme. DS has terrible nausea every time he gets sick.

[Christianmom]

philamom -- "I had it done through Quest- is there a difference?"

 

I really don't know, but I don't think so based on this site which mentions using either Labcorp or Quest:

 

http://mthfr.net/mthfr-test-how-to-order-a-mthfr-test/2011/09/17/

 

I said LabCorp because that is what my script from Dr. T said. But Dr. T only ordered the test by my prompting and at the time (about 1 year ago) he was not too terribly familiar with it. He may have written LabCorp on the script because he knows that is my hospital's preferred lab.

Edited June 27, 2012 by Christianmom

[philamom]

philamom -- "I had it done through Quest- is there a difference?"

 

I really don't know, but I don't think so based on this site which mentions using either Labcorp or Quest:

 

http://mthfr.net/mthfr-test-how-to-order-a-mthfr-test/2011/09/17/

 

I said LabCorp because that is what my script from Dr. T said. But Dr. T only ordered the test by my prompting and at the time (about 1 year ago) he was not too terribly familiar with it. He may have written LabCorp on the script because he knows that is my hospital's preferred lab.

Thanks.

[philamom]

Ok, I'm going to have go back and read all these MTHFR posts. I am heterozygous for the A1298C mutation and negative (normal) for the C677T mutation. I guess this is more evidence that I should have my daughter tested as well? husband too? thanks.

 

 

awesome phila -- me too! i can't find too much info -- a1298c doesn't seem as discussed or researched as c677t. surprised to see my pandas ds is neg for all mutations. there does seem to be some realtion btween a1298c and b12. my neurologist tested me for this b/c i asked while she was doing other blood work. she is blowing off result but also found me low on b12 and is giving me shots (i see her for migraine headaches). so i kind of feel i'm sort of doing something about it while trying to figure our what to do.

 

please let me knwo what you discover.

I have a follow up with the ordering doctor on the 16th. I'll let you know what she says.