lfran

I believe you can still have a personal belief exemption in California but a health care provider has to sign that they counseled you first regarding risks and benefits.

We are considering going to rothman soon. Are all the therapists equally good? Any I should request? Any I should avoid? Feel free to pm me if you prefer. Thx!

Sent you a PM

Just curious -- did the dentist use Nitrous Oxide gas as an anesthetic when he treated your son? There are a handful of kids on the PANDAS board who have MTHFR mutations, and Nitrous Oxide is supposedly very dangerous if you have this mutation. Wondering if that might be the link to the dental work causing the tics.

Don't know if this was DS' initial trigger, but this whole nonstop ticcing started about two weeks after he had two teeth extracted without prophylactic antibiotics -- and possibly with nitrous oxide. I know he had nitrous at least once from his dentist -- I *think* that was the time, but I can double check. I read that nitrous can be very dangerous to those with B12 deficiencies, and that having a MTHFR variation means that you should never have nitrous.

Who is Dr. B in California? LA area or Northern Ca? Can you PM me? Thanks.

Sent you a PM

Bumping this cause I would love to see if those with kids who are old enough to donate blood would see any positive effect after donation. At age 11, ds is still too young.

It happened once for my ds when he was about 9 and has a whole Ton of blood drawn. All his tics stopped for a few days. Only time ever. There is something called therapeutic phlebotomy where for certain conditions they draw blood as a treatment plan bit I could never get anyone interested in pursuing this. However he also had a lot drawn at age 11 and we did not see the same effect. But maybe it was a smaller percentage of his blood volume the second time

I think it all depends on the individual. The single mutation is very common (about half the US population has it), but it still impacts the ability to process folate. It may also be *part* of the puzzle, just not all of it. LLM has reported that addressing MTHFR has helped her daughter a great deal -- just double checking, but I'm pretty sure her daughter has only the single mutation. You can start reading up at MTHFR.net, if you want some comprehensive information.

Will dr cunningham talk with the treating physicians? Ds11 was sky high for the antid2 receptors also. No one seems to be addressing that piece of the puzzle for him.

Sent you a PM.

Well, that means that she is heterozygous for the MTHFR variation and this can impact her ability to process folate, although not as much as if she was homozygous for the variation. That whole cycle is involved in neurotransmitter formation. You might want to check old posts, because LLM has posted that her daughter also is heterozygous for this and supplementing small amounts of methylfolate has helped her enormously. As for the M. pneumonia, I think that maybe what you reported here are the reference ranges. Those reports are hard to read, but they usually give three reference ranges like what you posted, and then somewhere near those ranges are the actual value for your daughter. If you look at it again, maybe that will jump out. Actually, I just checked my son's results for M. pneumonia. Right after the words M. pneumonia IgM Abs is a value like < 770. Then lower and to the right are the words that you posted. That means that my son's value was < 770, which is negative -- he does not show antibodies to M. pneumonia. There should also be similar information for IgG Abs, but the reference ranges are different (like < 100). Hopefully that helps. If your report looks like mine, why don't you post again what her levels are. Maybe, like my son, she's actually negative for this and that would be one avenue you wouldn't need to pursue right now. Let me know, please, if this doesn't make sense.

Which spit test did you do? The 23andme spit test shows 100s of genes -- no one is "fine" on all of them! And, most importantly, what did your C677T results say exactly? Please look them up and post the results for the C677T and the A1298T if you have them both. Several of us have seen great benefit from addressing a C677T mutation. Not very many doctors know a lot about it, but addressing this has been very very helpful to my family and to at least a couple of other people on this board.

Lilly -- A lot of us have been taking the $99 23andme genetics test, which you can get without a doctor's prescription. It is a spit test, so non-invasive. It takes about 6 weeks to get results back, and you can order it from 23andme.com. Since it seems like you have tried everything, this may possibly shed some light on some underlying conditions. It might be worth a try, although you should read up on it first, since it just offers information such as: with this genetic variation, you are more likely to develop X or Y or Z or less likely to develop X or Y or Z. Also, if you haven't already done so, have you tested for KPU and MTHFR? The first is a urine test, and the second is a blood test, although 23andme will also test for MTHFR so you can get the info that way (but it takes a lot longer). Both are pretty easily addressed with targeted supplements. What do your daughters doctors say?

S and S -- I know that this has been discussed before, but have you had your DD tested for methylation anomalies? I ask because my DS had terrible fears that reduced dramatically when we started giving him methylfolate. He has the C677T++ variation of the MTHFR gene.

Anyone know if it's okay to get allergy shots when being MTHFR C677T homozygous? Not for my PANDAS child, but for his sibling, who is also MTHFR. Thanks!

Just curious how long it takes for Valtrex to lessen a viral load?

Hi Mayzoo. Just saw your info at the bottom and wanted to ask about the strabismus. My DS11 also has bilateral strabismus -- it is Duane's Retraction Syndrome, which he inherited from me. Just curious if your DD's strabismus is Duane's. Also, I have always thought that some eye positions are triggers for tics. Have you noticed any correlation that way? Thanks!

No,I think it's quite different. You can google 23andme.com. Is this the ame as the Courtagen test?

OK, so I got my test kits in the mail and am about to collect the spit samples. If I want to use a pseudonym, can I do that? Anyone know? LLM, I recall that you had a specific plan to protect your privacy. Are you going to use your actual names? Thanks!

Just wondering if others can chime in with dosages and kids' weights. Thanks!

Just found this paper and powerpoint by a group that focuses on the methylation pathway. Thought they were very interesting. For perspective, take a look at the "You are here" slide that is page 66 in the powerpoint. LLM, I thoughtof you when I saw this! Anyway, here's the paper http://m.ajcn.nutrition.org/content/80/6/1611.full.pdf And here's the powerpoint http://www.powershow.com/view/14bd82-OWMwN/S_Jill_James_PhD_powerpoint_ppt_presentation

Vitamin D always increases DS11's tics, every time we try.

Another way to get lower dosages is to buy Life Extension's 1 mg capsules and remove most of the contents. That's what I do. I stockpile the excess and I plan on buying empty capsules to refill them, so the excess isn't wasted.