Methylation dysfuntion questions

[cara615]

Popping over from the TS board. my son is 5, started ticcing around 3 or so. It was very mild with periods of no tics for months. This past May things reached a severe level with a screaming tic and multiple motor and vocals all at once.

 

We started on a holistic path with an integrative doctor. So far we have had allergy testing and he is intolerant to corn and gluten. We removed those as much as we can from his diet. he is 100% gluten free and 80% corn free.

 

We give glutamine for the gut, probiotic, cod liver oil and NAC 1200mgs a day. once we started the NAC (3 weeks ago) we saw a steady decline in his tics. The screaming went away and we were left with some motors. My son also has OCD and pics his cuticles and grinds his teeth. Those were still present but overall we were seeing great improvement. Just a lessening of the intensity and frequency of the tics.

 

Yesterday I got his nutraEval test back which showed, mitochondrial and methylation dysfunction (markers for it), possible candida (markers for it), low seratonin, low antioxidants, borderline iron and low B12.

 

The doctor wants us to add Vitamin E (as a cream), methylated B complex (B1, B2, B3, B6, B7, B9 and B12), iron glycinate liquid and 5-HTP.

 

Since I had the 5-HTP at home already I started that first last night. Today tics were worse and screaming was back! AHHH

 

I am afriad to give it to him again tonight. Should I just get the methyl complex going first? Maybe he needs better methylation before being able to handle the seratonin? i know his body needs it - why would it increase the tics?

 

Any advice would be appreciated.

 

Thanks

Cara

[LNN]

The problem with having a "methylation marker" is that there are nearly 3 dozens gene mutations that, under current thinking, play a role in methylation problems. Better methylation is not simply a matter of adding a B Complex or adding a methyl form of certain B vitamins. My daughter improved vastly with methyl B9 and needs to restrict B3 so she can increase her methyl groups. But my son needs the opposite - he needs the unmethylated form of B9 plus extra B3 to soak up extra methyl groups.

 

Plus, as you've seen, the order in which you address issues matters. If you don't clear out the log jams in the right order, all you do is move the mess to a different point in the stream. So maybe your son does need additional serotonin but there may be something else getting in the way and it's not a matter of simply adding more into the system.

 

Here is a good site that has links to the major contributors to the emerging field of methylation and epigenetics: http://sherleeholmes.com/2013/04/07/methylation-snps-testing-options-and-information-resources/ You can also search this forum for a lot of discussions on the topic. Personally, I've found testing with 23andMe to be very valuable in helping me find out what supplements were helping my kids and which were causing problems. My son gets tics when he's having trouble with detox but he also develops OCD-like tics when his zinc/copper ratio gets out of whack. He runs high on dopamine a lot of the time and one of his genes that degrades/lowers dopamine depends on the right amount of copper as a co-factor.

 

At a minimum, I'd ask your doctor to test your son's MTHFR gene status before you settle on the right B complex. But I found 23andMe much more helpful. Plus, I'd go low and slow when adding supplements and trust your gut. Personally, I wouldn't be pushing any supplements that made tics worse without first understanding why.

[cara615]

So because he is having methylation dysfunction does that mean has absultely has a gene mutation?

[LNN]

I'd say at least one. But don't panic. Nearly everyone has several mutations. I have 16, my DD has 14 and my son - the sickest one and the one prone to tics - has 13 - and that's just among the 31 mutations looked at in our particular reports. It isn't a matter of how many. More a matter of how severe and how easy or difficult it is to work around those mutations. Some play secondary roles, others play more major roles and they all effect each other. Knowing what those mutations are is really important, IMO. Just saying "he has methylation defects" is like saying "he has a nutritional deficiency". A deficiency in what?? Do you feed him more carrots or more bananas? I agree with your approach - supplementing to support the body in areas of weakness. But I think you need more information than you have before you can make an informed treatment plan. That's been my experience anyway, she who has overdosed her kids on the wrong stuff more that once!

[cara615]

Did you do all your testing through 13 and me? Is it just saliva? No blood tests?

[LNN]

We tested MTHFR through Quest and then did the 23andMe. Yes, it's just spit, no blood, no doctor's signature required. $99 for the first kit, $79 for additional kits if you order them at the same time. You should read a recent (last week) thread about privacy concerns just so you can make an informed decision. But it's been very helpful for me.

[cara615]

Do you think I can really figure this out? I am feeling so overwhelmed and scared. I haven't been on this journey for very long but i have learned a lot in this short period of time. Did you finally figure it out for your kids?

[LNN]

Yes, I think you can figure it out. My kids are doing much better (fingers crossed).

BTW - I never asked you about whether you've explored Pandas, since that wasn't your question. But since he goes periods of time without tics, you may want to rule out an active infection and also definitely get after that yeast. Yeast can cause tics and other behavioral issues.

[cara615]

I should and will get him tested for PANDAS. He has not been tic free since march though and honestly what I thought were tic free periods may have not been. It's just that I didn't notice what he was doing. Once I figured out it was TS (march) it all became clear that everything he was doing was probably a tic. Especially the less than obvious ones. However, once I realized it was TS and embarked on my holistic path, everything got worse. That is until I started NAC. NAC has brought his tics back to being relatively mild to the outside person. But yes, I need to rule out pandas.

[SSS]

We have had recent success with NAC,

but years ago tried 5-HTP

and it was awful.