PANDAS and MTHFR -- Relation?

[pr40]

Both of my kids have both MTHFR mutations, C677T and A1289C. ANd i am trying to figure of their version of PANDAS is. First, most of their blood work is normal, except for low B12, B6, and D3.

DD had ANA elevated to 1:320 but even that is in normal range now. (I know many of you have similar results.)

Both dd and ds have PANDAS behavioral problems (rages, inflexibility, tantrums). They also have tics, but no OCD.

Both are benefiting from abx, but it was not a cure for them. DS was on a steroid tape and that helped him a lot, too.

They are on supplements that should help with methylation.

 

So, finally, my question: can children that have PANDAS symptoms as well as MTHFR mutation be helped with IVIG?

If your child has these mutations, one or both, has IVIG helped? How much?

If you understand how MTHFR mutations contribute to PANDAS or PITAND or PANS, could you try to explain it please?

thanks in advance -- you all have always been there for us

[beeskneesmommy]

My son has only 1 mutation. His Dr. says that it does not impact him but makes him a carrier. I assume that I have the mutation as well, although I have not been tested. I am told that the double is the impactful mutation, as research suggests an increase in liklihood of 1 or several medical concerns (see attached link). There is no proven cause and effect betw. the mutation and PANDAS, just a correlation in so far as lots of PANDAS kiddos also have the mutation. There is just not enough data yet. My understanding with the double mutation is that increasing folate will be helpful to regulate homocysteine. However, I have read several people warning that the use of methylfolate must be cautious and that the right dosage and product is key, under a specialist's supervision. Perhaps in 10-15 years there will be more information as data comes in, depending upon the medical community's priorities regarding research into this concern...not sure if it helps as my son has only the 1 mutation, but he is a pretty classic PANDAS kiddo who has morphed into PITAND over time (reacts to infection other than Strep as well). He has come very far with daily abx over a long period of time and had another dramatic change for the better after IVig in Sept. At this point unless he is in a short, exposure induced flare, he is like every other normal, healthy 6 year old - even further advanced academically.

 

http://en.wikipedia.org/wiki/Methylenetetrahydrofolate_reductase

Edited January 19, 2013 by Beeskneesmommy

[LNN]

With the low B6, you may be having problems with detox, which is my son's case. He has pyroluria, a genetic issue (sorta related to methylation) that causes him to have a B6 and zinc deficiency. Supplementing B6 helps him a lot and is a key ingredient to making glutathione - the body's master detox agent.

 

Here are some good articles on pyroluria and mood issues:

http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

 

http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder

 

http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder (starts on Pg3)

 

MTHFR can also contribute to rages, rigidity, etc. It was THE issue for my daughter - who looks like Pandas (Higher Cunningham numbers than my Pandas son) but she's never been full blown Pandas and doesn't have pyroluria. Yet we treat with a ridiculously low amount of methylfolate and she's been stable for more months in a row than she's ever been, even now (January has always been her worst month for the past 4 years and yet we're at the 19th with no symptoms at all (knock wood).)

 

I think you can have both Pandas and methylation issues and/or pyroluria. I think they're inter-related but not the same thing. IVIG was a very negative experience for my son and I'd never consider it again. But then, he had undiagnosed Lyme at it caused a huge herx that lasted 10 weeks. So it's possible that with different precautions and lots more detox focus, we might've avoided the worst of it. I am also in the minority of parents who hasn't seen good things come from it. So I'm not trying to dissuade anyone from it. It just wasn't part of our solution. Because of my son's response, it's never something we considered for my daughter.

 

Last month, I tried to write a "MTHFR for Dummies" piece for a log site I contribute to. I tried to explain how MTHFR can affect moods. It's a superficial piece in that you can dig way deeper but when you're just getting into it, it can be very confusing. So it was meant to be an introduction, not an in-depth thing. Maybe it will help a little.

http://www.easytolovebut.com/?p=2782

[colleendonny]

My son is homozygous A1298C, and PANS. I would never have known he had PANS it it were not from his sisters overnight onset. He also started a stutter overnight when he turned three.

Like LLM, my son has rages and rigidity. He hates to be told no and will let you know. He is extremely impatient.

While every one who has the MTHFR mutation likely does not have PANS, I am sure having the mutation is just another piece of the puzzle.

There is an MTHFR support FB page.

I plan on making a phone consult very soon with one of the doctors, Tim Jackson or Ben Lynch.

[landamom]

Colleen, just an FYI, Dr. Lynch doesn't do consults anymore, but he still has a good protocol page that we found helpful in understanding things... His site is MTHFR.net.

[nicklemama]

My son is compound heterozygous and PANS. We've been treating MTHFR for 10 months. I do not see it helping the anger and rigidity. The only thing that has helped is IVIG and abx.

[lfran]

Can I ask what you are using to treat the MTHFR? Thanks

 

My son is compound heterozygous and PANS. We've been treating MTHFR for 10 months. I do not see it helping the anger and rigidity. The only thing that has helped is IVIG and abx.

[pr40]

we are at the beginning of trying to find the right supplements. We started with mb12 alone, 1000mg. It worked but it made both kids hyper. now, both kids are on Seeking Health OPtimal Multivitamin with L-5-MTHF -- dosing is still an experiment, either 1/2 or a whole pill. they also take additional zinc, iron, fish oil, additional D and A vitamins, and sometimes P5P. Both kids are also on abx. We are also beginning to be careful about apartame, phenylalanine. I guess, it is not only what they take but also what they DON"T take.

[nicklemama]

DS is taking B12 shots, B6,B3, methyl folate, zinc, alpha lipoid acid, fish oil, vit d, vit c, vit e, p5p.

Edited January 20, 2013 by nicklemama

[LNN]

DS is taking B12 shots, B6,B3, methyl folate, zinc, alpha lipoid acid, fish oil, vit d, vit c, vit e, p5p.

 

Curious why you're supplementing B3 - which is a methyl-taker. Usually, when someone is hetero or homozygous MTHFR, they're undermethylated to begin with and you'd avoid excess B3 (which uses up methyl groups) because you don't have enough methyl groups to begin with.

 

When I overdid the methylfolate for a time while we were figuring out the proper dose for my DD, she became temporarily over-methylated and I used a small amount of B3 ( 50mg niacinamide)to counteract the "overdose". I used this as my guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/

 

Wondering if the mood issues you're still seeing are related to the niacin?

[nicklemama]

Oops, he is not getting b3. I typo'd for b6 then added it to the end. For those not familiar, p5p is a form of b6. I'm glad you caught my error. I had read about niacinamide and have been wondering if it would be good to give to DS for its anti inflammatory properties. Guess I now know the answer!

 

I am working with a biomed doctor who tested DS and came up with this plan. I'm not as good as LLM is in figuring out all this.

 

I guess I should proof read lol. I see I had already put b6 down. Oh, we'll, can i blame it on PANDaS mom brain.

Edited January 21, 2013 by nicklemama

[LNN]

Oh, I blame Pandas for all sorts of things - certainly you can blame it for typos!

 

Ok, glad you're not giving B3. I too once thought about using B3, with all the good stuff I read about it. Until I came across how it works in methylation.

 

The stuff you're giving seems good for the C677T mutation (tho you might ask your Dr about adjusting doses of methylfolate to see if that helps the rages - my DD uses a ridiculously low dose - every other day. When I've done every day, she starts to get agitated again. So playing with dose is just an idea if you get frustrated. Gaba also helps calm both my kids on bad days(one has MTHFR mutations, one doesn't). We don't use Gaba daily - just when they're in rough patches.

 

What I don't see for your DS is anything for A1298C. Are you treating that or just focused on C677T? I can't find tons of info on how to supplement for A1298C - Yasko talks about BH4 which you can't get in the states. She also mentions TMG but not many people talk about how well it does or doesn't work.

[pr40]

i wasn't able to find TMG anywhere. Yasko's site is extremely confusing and don't give much info about their products. If you can suggest something, i'll try it.

There is this also -- the fact that someone has a mutation does not mean that that you know exactly what its manifestation is. one may or may not need to do something about it. For us, it is hard to figure out which of the mutations is contributing to what symptoms. it seems that most symptoms are related to C677T, but we are not sure.

[nicklemama]

We don't seem to be doing anything for the 1298. I need to do some more research on it. The biomed we see is highly in demand and while he wants to see DS every 3 months, he's booked out for 5 months. I have an appt to take DS to see someone else in couple of weeks. She has an asd child and is a trained ped doing biomed. I heard her speak about PANDAS at a biomed for asd kids conference. She's no expert but she's willing to learn. I'm going to to test her lol. I have a big list of questions. Only had to wait a month for an initial appt which will last an hr. she does phone consults in 15 min increments and she is local to me in that it is a 45 min drive. DS is not asd but that conference was very informative and I got to listen to the top biomed docs in my area.

Edited January 22, 2013 by nicklemama

[Hopeny]

Oh, I blame Pandas for all sorts of things - certainly you can blame it for typos!

 

Ok, glad you're not giving B3. I too once thought about using B3, with all the good stuff I read about it. Until I came across how it works in methylation.

 

The stuff you're giving seems good for the C677T mutation (tho you might ask your Dr about adjusting doses of methylfolate to see if that helps the rages - my DD uses a ridiculously low dose - every other day. When I've done every day, she starts to get agitated again. So playing with dose is just an idea if you get frustrated. Gaba also helps calm both my kids on bad days(one has MTHFR mutations, one doesn't). We don't use Gaba daily - just when they're in rough patches.

 

What I don't see for your DS is anything for A1298C. Are you treating that or just focused on C677T? I can't find tons of info on how to supplement for A1298C - Yasko talks about BH4 which you can't get in the states. She also mentions TMG but not many people talk about how well it does or doesn't work.

LLM after reading your posts on MTHF 5 I have dialed down DD's dose (turning 9, 65 pounds) She started at the same time as Rifampin for Bart and I have seen rages which I have assumed was Bart. She was taking 5 MG/day. I have 10 MG capsules so am trying my best to approximate 1 MG (am ordering a lower dose) . My question to you is, how quickly do you see a difference? Its so hard to know whats what. Also I have been giving Burbur, it seems to help and she is actually willing to drink it, so I am wondering if it is in fact Bart. Over the weekend she said I don't kmow whats wrong with me, I'm crying and I'm not sad. She said she feels out of control with the rages. Didn't really happen before the Rifampin. The good times are much, much better/more frequent, she wants more activities etc. DD has one copy of 677T and low glutithiaone (sp??). I am giving 300MG NAC, tried more but I dropped it back to 300. (more affordable at 300 anyway lol)

Edited January 22, 2013 by Hopeny