Jump to content
ACN Latitudes Forums

lfran

Members
  • Posts

    640
  • Joined

  • Last visited

  • Days Won

    1

Everything posted by lfran

  1. 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!
  2. I saw a huge improvement in anxiety in about 3 or 4 days. DS11 is C677T homozygous.
  3. Can I ask what you are using to treat the MTHFR? Thanks
  4. 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 in Wednesday's CNN.
  5. 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 care doctor put him on a zpack (250 azithromycin for 5 days). This is DS11's first case of active strep in years, and only his second active case ever, although he is probably an active carrier, based on past high DNASE and high ASO titres. For the past year, the DNASE and ASO have been down to normal levels so we thought maybe he'd beaten this. I have calls out to our regular doctors, but this urgent care doc was certainly not going to be treating based on PANDAS. In your opinion, is the zpack going to be enough? Will it be enough for a few days till we get back home? We just haven't had to deal with active strep in years, and it is the holiday weekend far from home. Any advise is appreciated. LLM, any thoughts re: strep and methylation? He is on methylfolate, which helps more than anything else we have tried, but only seems to help the anxiety, not the tics and OCD. Thanks!
  6. 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 loud, as this thread has been in my mind. I will say that one of my sons was totally relieved to learn that the tooth fairy, Santa, etc were just fables. He couldn't figure out how they got into the house, and he was relieved to learn that they didn't! He liked learning that they were just symbols of the love that parents have for their kids.
  7. 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?
  8. 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. That's one of the conditions that the prescription brand is used for. The test is one your doctor can order. It is called MTHFR, DNA. Hope this helps. If you decide to go this route and it helps, would you re-post and let me know?
  9. 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.
  10. 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
  11. Did you submit and they said "No"? When they refuse, is that a "ding"? This is my first time dealing with a PPO.
  12. 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!
  13. 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.
  14. 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 health savings account to pay for it, with further tax savings. Another HUGE benefit for me vis a vis HMO and PPO is that I can self-refer to ANY specialty with the PPO plan. The HMO does not serve as a gatekeeper. If I choose to go to someone who is completely out of network, but he or she will send labs to an in-network lab (Labcorp or quest, or even metametrix now), I get the negotiated price that Blue Cross has with the lab. HUGE savings over when I was paying out-of-pocket costs for non-HMO doctor's labs. But, watch out for presciption plan costs, which can be pretty variable and not cover all meds. If you know which meds you are likely to need, you can call and ask their cost for those. Leaving my HMO was a large cost savings for me, but we were using a lot of non-HMO docs. There is a lot more paperwork if you use out-of-network docs though.
  15. 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 tell you if you call. BTW, their "phone person" knew very little and *she* suggested I talk to the lab techs directly.
  16. I was going to say the same thing re: MTHFR and pregnancy loss.
  17. Bumping this, because I really am curious if anyone else has Duane's Retraction Syndrome (or kyphosis!)
  18. 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 results when we ask him to try to replicate it, but I still keep thinking about "out of the mouths of babes..." By the way, I also have Duanes and have very little/no binocular vision. I basically only use my dominant eye. Not a big deal, at least not to me. Hasn't stopped me at all (would have kept me out of the military, probably, and I can never be a pilot). I read constantly, drive fine (parking is a challenge, but a backup camera in my car has cured that problem) and basically don't consider it an issue. So although I know it's a scary thing to think about only having vision in one eye, just wanted to put in my two cents as an adult for whom it hasn't been an issue at all. (I do have vision in each eye, I just don't *use* my left eye unless I close my right one).
  19. 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.
  20. I tried it a while ago. It is quite expensive (there is a numerical factor, and the higher it is, the better the honey is in its medicinal properties, apparently). I thought it was delicious, but it is a very different tasting honey than I have ever had, and I couldn't get my kids to eat it. But I thought it was pretty intriguing. I just came across information of this today. I was very intrigued by the use in hospital settings for bed sores. I am also curious to know if anyone has tried it. Have you found anything new on it, or tried it?
  21. lfran

    Hi!

    In a post for Wilma, you mentioned an email about Dr. J's interpretation of Igenex labs. I'd love to see that, too.

    Would you mind emailing it to me here as a PM? Thanks!

    -- Liane

×
×
  • Create New...