MTHFR C677T

[StillHopeful]

My son's lab showed that he is homozygous for MTHFR C677T. Can anyone help me w/ this?

 

 

How serious is it?

 

How does this relate to PANDAS/PANS - why do we test for this? Does it cause - tics, ocd, anxiety ...blah blah blah.....

 

Can you treat orally or does it have to be injections? If orally, what should I get?

 

I just am very overwhelmed at the moment and any easy to follow info would be helpful.

 

Thank you so much!

[LNN]

MTHFR and Pandas are two separate issues. You can have one without the other. But it's like ketchup and french fries. If you have them both, it can put a little different spin on your treatment. You might have better success getting to 100% by treating both Pandas infection/inflammation plus the impact MTHFR mutations have on your ability to make dopamine and serotonin.

 

This is the closest "MTHFR for Dummies" article I can get to - it leaves a lot out. It doesn't get into Pandas. But it tries to explain how a mutation can effect neurotransmitters and moods. How supplementing with methylfolate plus methylB12 can help, how you need to start very, very low dose and build up, how there's no established "correct" dose, especially for kids. http://www.easytolovebut.com/?p=2782

 

Can it cause anxiety? yes. Can it cause tics - yes, if the tics are a result of dopamine issues (sometimes tics are a result of detox issues, not dopamine). Can it be taken orally, yes - but you need to make sure it's the right kind of methylfolate (see this article when you're getting ready to order http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/

 

You can google "methylation protocol" and find different suggestions on how to treat. For my DD8, I am just giving a tiny amount of methylfolate and methylB12 every other day. This is keeping her moods pretty stable, which is a huge accomplishment. Other people need higher amounts daily.

 

Is it serious? Well, it probably has some long term impact on health and puts him at risk for heart disease, stroke, certain cancers. It would certainly impact mood. But is it deadly for him right at the moment? No. It is something that should be treated and treatment is lifelong. My DD will always have to take a methylfolate supplement and be wary of foods or vitamins high in regular folate. Especially when she's ready to have kids.

 

None of us here has a medical background and the best bet would be to find a doctor who has experience. But that's easier said than done. So we can give you suggestions and point to helpful sites. But there's no single answer.

 

How old is your child? Weight? what supplements does he currently take?

[StillHopeful]

I have two boys that are diagnosed w/PANS/PANDAS. The one that was tested for the mutation is 15 years old and is 125 lbs. He is taking clexa (weaning off at 10 mg) and buspar. He is also on an elimination diet for 1 month which is making him tic more and he is having anxiety attacks/mania at night (don't know how to describe it) so I am afraid to add something new to the mix. I took him off multivitamins, omega and probiotics because they were new too and I didn't know what was making him worse. I kept the diet.

 

This new DAN doctor sells the supplements and I spent $150 on the vitamins/supps at our 1st visit. Yesterday he told us about the MTHFR and said my son needs either to take a shot every other day or nasal spray each day. It would cost $100/month. He said that it would not work orally. He also didn't explain how this is effecting his behaviors which are (tourettes like, ocd, anxiety, tiredness, hyper, impulsive, attention issues). Another thing, his folate is high and his feratin is low.

 

Thank you for sharing the link w/me. I am going to read it now. You certainly calmed me down. I am having a very bad day w/ both kids (plus PMS)

[LNN]

Many things I've read say that methylB12 is poorly absorbed if taken orally and so many doctors suggest B12 shots. Maybe that's what your doctor is referring to. Not familiar with nasal sprays. However, I've also read a few things that suggested methylB12, that was already methylated, might be absorbed orally without a big issue. A lot of methylB12 supplements are taken sublingually (dissolve under the tongue) so it gets absorbed before reaching the stomach. Debate about how much gets absorbed, but when you're on a budget, well...I've taken my chances. DD has huge needle phobia. So she takes a sublingual and we hope for the best.

 

Dropping the multivitamin was probably a good idea. Most contain regular folate, which you want to avoid. To compensate, my kids end up having to take additional single-vitamin supplements like magnesium, D3, C, etc. But you'll want to look into getting methylfolate into your son - and at a low dose. It's like a clogged sink - when you first get things going again, you may see an increase in behaviors as detox gets underway.

 

As for the increase in tics you're seeing, one possibility is that he may have yeast. By doing an elimination diet, you may be starving the yeast. Yeast die-off releases toxins - this is a good article http://mthfr.net/methylation-inhibited-by-candidas-toxin/2012/09/08/. Toxins can make some people tic. Mold can cause many of the same issues as yeast.

 

If he's on antibiotics, I would seriously consider adding back the probiotics - a good blend of strains. Theralac is a personal favorite but there are many. I would just avoid Sacc. Boulardis until you have everything else stable. My son reacts badly to Sacc B even tho it's supposed to be good for people on abx. You might also ask your DAN to do a yeast test - either blood test for candida antibodies or a stool test. Then discuss treatment options as well as detox ideas.

When I first went down this path, I bled cash on supplements and tests. Some helped, some went into the "shoebox of shame" where I can't use the stuff but feel too guilty about the money I've spent to just throw the stuff away. Sometimes I circle back and find one of those supplements helps at a later time, when other things have been fixed. But I would certainly read as much as you can on methylation, given that he has two mutations. You might also want to lurk on the facebook MTHFR Support page or contact one of the practioners who chime in there. They may be able to work with you and your DAN to put together an affordable plan of attack.

 

(fyi - since your son has 2 mutations, both parents carry at least one MTHFR mutation as well. You get one from each parent.)

[pr40]

we have both mutations. anyway you look at it, supplements are expensive. question is just how expensive. we started with very small doses of mb12 vitamin from Puritan Pride (read, cheap). Had effect immediately. Actually, too much effect. now, we are trying to find the right balance. Seeking Health multivitamin seems to work for both kids. Half a tablet a day. which is much much much less than what your DAN is suggesting.

[MamaOnAMission]

My child's test said:

C6772T MTHR mutation identified and...

 

not one doctor said to do anything about it.

 

Also, what does " homozygous" mean????

[LNN]

Homo means two of the same

Hetero means one of each

 

So if you are heterozygous, you have one mutation on your MTHFR gene

if you are homozygous, you have two mutations

if you have "wild type" it means you have no mutations

 

In your DDs case, the mutation is called C677T. The simplest explanation I can point to is the link in my first reply. http://www.easytolovebut.com/?p=2782

 

Some doctors feel that having only one mutation is not serious and doesn't need to be treated. Other doctors feel it's a very big deal. I can only say that treating my DD (who has one mutation aka heterozygous) has made a huge difference for the better.