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Everything posted by lfran

  1. Vitamin D always increases DS11's tics, every time we try.
  2. 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.
  3. I think we are about to start valtrex, due to some very high antibody levels on a couple of typical PANS viruses. It's pretty expensive (almost $200). Side effects sound scary. DS11 is MTHFR C677T homozygous. Doing pretty well, but would love to get to 95% or 100% ) Can anyone post (or repost, cause I know there was a discussion a while ago) about Valtrex experiences. Thanks!
  4. I saw a huge improvement in anxiety in about 3 or 4 days. DS11 is C677T homozygous.
  5. Can I ask what you are using to treat the MTHFR? Thanks
  6. I think the mercury free ones are only for kids age 3 and under. I remember having to insist on it for my older kids. And if you ever do get one from a multi-dose vial, make sure you get first dose and they SHAKE IT in front of your eyes. Otherwise I have read that the mercury can settle and all go in the last dose, which is a massively large load. I recall reading a study/paper about this years ago when I first looked into it. BUT, I just saw a CNN report that only the US and Canada push for population-wide flu vaccines. In Europe and elsewhere, they don't even consider it. It was i
  7. Hi all, DS11 is probably PANDAS. Sudden onset at age 6, consistently high titers in the past, positive on Dr. Cunningham's panel. Also probably positive for Lyme and definitely MTHFR homozygous for C677T with abnormal methylation markers. He has been off all antibiotics for about 8 months. He was just diagnosed an hour ago with active strep while we are on vacation. One day of self-resolving high fever and a mildly sore throat. That's it! When I got strep (once!) I was in so much pain I couldn't believe it. I think these PANDAS kids just present differently. Local urgent car
  8. I've been thinking of this thread as we get closer to Christmas. What would happen if, on January 1, you guys told your kids that "it's a new year,and this next Christmas is going to be totally different". No presents at all -- maybe a family trip instead, or family activities, or giving to charity, or going out caroling, or giving him only a gift as his present that he can spend as he wishes, or just completely cold turkey? Go back to the original "Christmas spirit" idea? Thinking of making the announcement on the first day of 2013 so that expectations don't build? Just thinking out l
  9. Did you ever have any success with this? I am looking for the same. My health plan only covers the pediatric immunologists at CHLA. Have you looked into them?
  10. Nothing to add on that med, but I will mention something else. A lot of the kids here are showing up to have a mutation in their folate metabolism (and the folate pathway feeds into neurotransmitter formation.) This mutation means that they can't process folic acid very well at all, but there is both a prescription and an OTC version of an "active" form of folate called methylfolate that bypasses the blockage caused by the mutation. My DS11 has this and when we started on the methylfolate the anxiety dropped down significantly. Methylfolate is also known to help with depression. T
  11. methylfolate, which you can buy from iherb.com, helped my son tremendously. He has the C677T homozygous mutation. It got rid of major anxiety/panic attacks. He still has some OCD and tics. We're continuing to work on that.
  12. I am sooo sorry to hear that. How terrible for you. Thanks for the info. Had a phone consult with doctor today. We are going to try adding zith back on Thursday. Please send a prayer that it doesn't bring us a drug induced lupus flair. She is very,very tough right now - non compliant, won't brush/wash, exc. Begging to be placed with a foster home
  13. Did you submit and they said "No"? When they refuse, is that a "ding"? This is my first time dealing with a PPO.
  14. Hi all. Am probably going to take DS to a new doctor, who I am assuming will want to start SSRIs. This would be a first for him. DS is probably pandas and probably Lyme. Is definitely MTHFR C677T homozygous and methylfolate has helped a lot, but not all the way. Anyway, based on others' experience, what should I say when SSRIs are offered? Are they worth a try, in very small dosages? We'd love to get some relief from the tics and OCD while working on longer-term issues. He's also started CBT. Thanks!
  15. Hi all. Am thinking of biting the bullet to get Advanced Laboratory's Lyme culture test done. I know there is a 20% false negative rate, so I'm a bit scared of throwing money away. Does anyone know if insurance will reimburse for any of this test? I have Anthem Blue Cross, by the way. Also, what do the LLMDs think about this test? Any feedback from them? Thanks.
  16. What I learned to my surprise was that as a Blue Cross subscriber, I got the "member" rate even when I hadn't met my deductible. So a doctor that was PPO but not HMO would charge me $300 if I was HMO only but if I went to him under the PPO plan, I got the negotiated rate of, say, $120. This is even if I hadn't met my deductible. I spent 20 years with an HMO and this year am in a combined HMO/PPO plan. For next year, I am choosing to go to a very high deductible plan with a much lower premium, because the premium savings pretty much matches the deductible and I can put money aside in a h
  17. I'd love to hear what they say if you call them. I am considering it, 'cause DS11 has been off abx since spring. His main band was p58, which I think is mostly associated with b. afzelli, which is not very common in US but more common in Europe, but they test for that, b. burgdorferi, and b. gazanii, I think. I called them a few days ago asked their lab tech which of their many options I should use to get the most for my money and he said the basic test (at 595, I think) is all I should need for a positive culture, rather than the more expensive options. But I'd love to hear what they
  18. I was going to say the same thing re: MTHFR and pregnancy loss.
  19. Bumping this, because I really am curious if anyone else has Duane's Retraction Syndrome (or kyphosis!)
  20. Wanted to clarify, that even with Duane's, DS11 was a VERY early reader and was and still is an avid reader, to the tune of many hours a day, but we have no idea how well his eyes work together. Probably very little. One very interesting tidbit. When DS11 was about 8, he was ticcing a lot at a restaurant, reading at the table while waiting for the food. My husband asked him if he could try to control it, and wonder of wonders, it stopped! When we asked him how he did it, he answered "I switched to the other eye". He has since retracted that statement and we have not seen similar resul
  21. Just curious -- does your daughter (or anyone else's kid) have Duane's Retraction Syndrome as part of their strabismus issues? MY DS11 and I both have this.
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