lfran

Hi! Can you either post or PM me about your waste of time/harmful experiences? DS11 just started seeing a therapist at a local OCD clinic (which also does intensives) -- not USF. I've been really pleased, because he is really opening up and talking to her about things that bother him and he is willing to do at least some of the homework. As I said, we just started, and he was given an ERP assignment for this week. It is also helpful to me, to see how someone else approaches him/draws him out/etc and to feel less alone. But it sure does cost a lot in terms of time and money (by the time we drive there, have the appointment, have lunch and go back, it's half a day!) I don't know if USF is in the cards, but I'd love to hear more (with details, if they're helpful) about why your non-USF therapy sessions were not helpful. Thanks!

There is a mthfr guru at mthfr.net -- he will help you order the DNA test for about $150. Rowingmom, is LabCorp in the U.S. only? I want to do the MTHFR testing, but not sure if I can get it here and don't see the doc until September. I don't want to bother with the appointment if I can't get the tests here in Canada.

It's been a while since we tried fish oil, but I think it calmed down in a few days. After the glutathione injection, it took over a month. But others have done really well with glutathione, so it's hard generalize.

Fish oil was horrible, and so was a glutathione injection.

Just be aware that that is one of the drugs that severely affects the folic acid cycle, so make sure your docs know what to do about that, and it is probably a good idea to get tested for MTHFR or other folate issues if you are considering going that route.

I will email you later, but I'm pretty sure kinder is optional legally -- so you could probably just keep him home and start next year, if your school will let you. HI Julia, Vitual academy is specific to your state or all states? I am opting for homeschool since Kinder is such a breeze and healing is most important at this time.

Hi Socalmom -- How are you? Glad to see you guys are in a treatment plan. One possibility might be to ask the school to defer your admission for a year, so you can concentrate on healing. At that point, maybe they could assess your son to see if he could go into the grade he would be "supposed" to go into, or if he would need to go into the grade that he is planning for now. Is he supposed to be starting K or 1st this fall? Also, if he does have to go to the first day, is that something that you can manage? Then both you and they would have more information to make your decisions. (Just curious, do you mind telling me which charter school? You can PM me if you want).

What part of the country (world) are you in or willing to travel to?

You can get the leucovorin compounded, so I imagine it is dye-free. You can also buy it OTC, but in pretty small dosages (.8 mg).

Thanks! I was on heparin (an older form of lovenox) for one of my pregnancies, and my son is C677T homozygous, so I was wondering if there was some connection that I missed!

What is the lovenox supposed to do? Thanks.

EVERY time we try to add Vit D supplements (D2, D3, dry D3) my son has an increase in tics. We've tried about 5 or 6 times now, 'cause the docs are always worried about his relatively low (low 20's) Vit D levels.

Thank you, everyone. Yes, this is the type of info that I'm looking for. The therapist charges in this range (150), but I just have no clue what my insurance considers to be reasonable and customary. It's so frustrating! I'm with Anthem Blue Cross. This is the first time, as I've been with a large HMO for the last two decades, so I just really don't know what to expect. They pay 70% of reasonable and customary, until we hit our max out of pocket, which may be coming sooner than I think, at which point they pay 100% of R&C. Aaargh!

Hi all. We are going to have to go out of network for CBT therapy. Does anyone know what is considered a "reasonable and customary" cost for this? My insurance will pay 70% of "reasonable and customary", but they WONT TELL ME what that is! Thanks! We are in Los Angeles -- I know that costs may vary depending on area of the country/city.

OCD often goes hand-in-hand with tics. They could be compulsions, which are a lot less repetitive than the tics.

Very very common. I keep thinking my son's current tic is the worst, and then the next one comes around and I miss the previous one!

My DS11 had major improvement in anxiety when addressing his MTHFR deficiency with methylfolate (available online from iherb.com, among other places.)

When I looked into it, it's supposed to be absolutely terrible for adults but really easy for kids.

Thanks! Which step in the pathway is the folinic acid, do you know?

I have read about doctors dosing at 1 mg/kg. My son is 100 pounds, so that's 45 kilograms. Is that the kind of dosage you are talking about? We saw great results with reducing/eliminating anxiety and bedwetting at lower dosages, but those tics and that low-level OCD just won't go away. Also, is there supposed to be a pharmacological difference between leucovorin and the OTC methylfolate supplements? Aren't they the same active compound? Thanks!

If you go the tic-tac trial route, then you can try moving up to larger candies. I taught my son when he was 5 to swallow pills by using m&ms.

Thank YOU for all that info. Do you mind telling me, where are you geographically?

http://www.mindmeister.com/12721370/mthfr-treatment (This came from the following web page: http://nwhealthcare.net/index.php?id=64 (However, some of his stats don't correlate with what I've read. LLM, what do you think?)

Are those of us with MTHFR supposed to avoid folic acid? It seems to be everywhere. Cheerios alone has a ton!

Since each child gets one gene from each parent, a homozygous child means that each parent is at least heterozygous, passing on the mutated copy to that child. If any of your other children had NO mutations, then you would know that your DH is heterozygous (that child got one "normal" gene from each of you). If all of your kids are either heterozygous or homozygous, then you know your DH is either heterozygous OR homozygous-- but you don't know which.