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lfran

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Posts posted by lfran

  1. Sent you a PM

     

    DS (14.5) was diagnosed November 28, 2012. He probably had PANDAS for at least a year if not many years. He was always anxious and rigid in his likes/dislikes. In late October we started working with a CBT specialist a few times a week. At the time DS was praying so much that he would miss classes, showering for 1-2 hours and generally take forever to get anywhere. Working with the CBT therapist helped limit the praying and shortened the shower, but then going to the bathroom got so long that a few times he got stuck in OCD and stayed in the bathroom 8, 10 and even 19 hours. We met with Dr. Trifiletti and DS tested positive for Mycoplasma, CoxSackie and Strep. He has been on Augmentin, Valtrex, Biaxin, Predisone, Clindomycin, Doxycyclin.Rifampin. When he goes off the meds he tends to spiral further down, but the meds have not really improved anything. According to his blood work, the Strep kept rising through all the antibiotics.

     

    Now he doesn't do ANY OCD stuff. He just lays on the couch, sleeps & sometimes cries. He hasn't been to school in 3 weeks and we have stopped the CBT.

     

    Last week Dr. T said that we should try IVIG. We agreed to pay out of pocket and were supposed to get it done this week. DS caught Strep from his siblings on Friday and is being treated for it, although he still complains that his throat hurts. It's ironic since Thursday was the first time he showered and left the house in 2 weeks : (.

     

    My question, is it normal to feel like you're being hug out to dry while you wait for the drs. to call you back?

     

    Is there hope that DS will come out of this? He was so much better before we started CBT or treating the PANDAS, is it just a coincidence that my house of cards started to tumble all at once?

     

    Any thoughts, advice, kick in the ___ is appreciated.

    T.Anna

    DS 14.5

  2. 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!

  3. 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.

  4. Thanks! Off to the store for supplements.

     

    Zith seems to work well for some kids and not for others. But I'm guessing it'll be ok until you get home. Then depending on how he's feeling/behaving, you can always ask your pedi for additional abx if needed. Consider some zinc to help the immune system and some B6 and alpha lipoic acid for glutathione production.

     

    If you're seeing OCD, you can try using 5-HTP or tryptophan to bump up the BH4 cycle(my DS10/82 lbs takes 500mg 1xday normally, 2xday in a flare). If you find yourself using it for any length of time, consider adding tyrosine as well (maybe 250mg? to start), as it's best to use both for balance.

     

    For the tics, you can try taurine. This helps my DD when she's a little jittery. But what helps my DS for tics is detox - B6, milk thistle, alpha lipoic acid, resveratrol, activated charcoal. No instant cure but they help the tics subside more quickly. Not all tics are caused by toxins, but for my son, his tics come out when we fight an infection and the toxins from the dying bacteria overwhelm his transsulfuration/detox pathway. We see it when we treat strep and when we do cyst busting. The supplements I listed help him. And don't forget the motrin.

     

    If you're freaking, try some Gaba or tryptophan or valerian root (for you, not your child). I find I handle things better when I'm calmer and I've come to like Gaba - mild. I stay feeling normal but when I look back on the day, I realize I stayed calmer than I might have otherwise.

  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?

     

    Does anyone know of a good immunologist that specializes in PANDAS/PANS in California?

    Preferably in Orange County, but we're 1 hour from Los Angeles as well.

     

    We went to an ENT at CHOC who thinks we should see an immunologist but did not know if any of the immunologists from CHOC would be interested in taking our case on or not. Still hoping to hear back but its been a week.

     

    Thank you!

  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?

     

     

    I apologize for the repeat topic, but I was writing here after MomWithOCDSon advised that many PANDAS users infrequently check the other forums.

     

    I was just curious if anyone (or their children) had been having success with low doses of Memantine? I am freakishly sensitive to medication (a slow metabolizer, as my psychiatrist postulates) and have tried just about everything to treat severe OCD and ADD -- either with debilitating side-effects, or a lack of efficacy.

     

    10mg and 15mg of Memantine exacerbated my anxiety and caused agitation. I tapered back to 5mg, which was more tolerable, but still increased anxiety. I'm now planning on trying 2.5mg and would like to hear of any positive stories, just to keep morale up, as I am growing rather desperate and hopeless. I don't expect any miracles, but if it could ease the constant phobic avoidance, inner tension, etc. that would be a nice start.

  9. I am sooo sorry to hear that. How terrible for you.

    Here is a link for Para-A: http://www.evitamins4u.com/para_a

     

    Here is a link for Parasite-Comp: http://www.enzymes.com/732.html

     

    Alinia is always good as an antibiotic for parasites.

    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 :(

  10. 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!

  11. 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.

     

    It's almost open enrollment and given our medical expenses we've decided to re-evaluate our plan options this year, instead of automatically re-enrolling in the HMO. Wondering if the plans that are more costly up front might actually be better for us in the long run. Has anyone else done this? If so, any tips on plan shopping and/or feedback on other plan types? I know a lot of it will be plan-specific but still interested to know how such changes have worked out for others. Also would really (really, really) appreciate any heads up you may have on things to watch out for when comparing plans, pitfalls to avoid, etc.

     

    Thanks all!

  12. 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.

     

     

     

    You could call them and ask questions. They took my calls.

     

    My daughter's results say:

    Patient blood culture displays positive growth of spirochetal organisms in the blood which stained positive via immunohistochemical method using polyclonal antibody for Borrelai burgdorferi.

     

    Then we received a picture of the Spirochete/Borrelia Culture. It had three spirochetes in it.

  13. I was going to say the same thing re: MTHFR and pregnancy loss.

    I think if you can get a "normal" baseline assessment, it may be a positive in the sense that in this winter, if you hit a flare, you can point back to this time and say "see, this is the "before" picture of my daughter and what you see in your exam room is the "after".

    But I totally get your apprehension.

     

    I don't have any great suggestions, since I'm not familiar with Canadian health care. But the one thing about your post that caught my eye was your mentioning you've lost a lot of pregnancies. If you haven't been tested yet, you may want to ask your doctor to test you for 2 mutations of your MTHFR gene - C677T and A1298T. There's a possibility that a mutation on this gene can lead to miscarriage. In addition, it can effect seratonin levels. If you can't get the test, as a precaution, you may want to take methylfolate instead of regular folate/folic acid during your pregnancy. This site has some helpful information http://www.mthfr.net

     

    My DD has one mutation on this gene and treating her with a very small dose of methylfolate has reversed some hard to predict mood issues. For some, methylation issues have contributed to some of the OCD, anxiety or rages our kids experience. It may be something to put on your radar for both you and your daughter.

     

    Good luck with the appt!

  14. Bumping this, because I really am curious if anyone else has Duane's Retraction Syndrome (or kyphosis!)

    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).

     

    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.

    It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

  15. 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).

     

    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.

    It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

  16. 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.

    It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

  17. 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.

     

    Has anyone used Manuka honey and felt it helped even a little to address strep? I imagine difficult to balance to not incrase yeast. I am off to google this.

    Thanks.

    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?

  18. Thank you. That's very helpful!

    Ifran-

     

    It really boils down to (for us) that our local psychs were not tough enough, because they really did not "get it". So instead of the therapy for an ocd being painful, but quick- it was long, drawn out, a lot of talking, and a lot of stress.

     

    A therapist should be having them face their fears directly, and should not be swayed by any BS that the kid offers. There is not a lot of need for conversation (because we all know how the ocd kid can come up with a lot of reasons, excuses, etc).

     

    Our therapist at USF had them "doing" and not talking. It was a very no nonsense, up front, honest approach. I cannot say enough about it.

     

    When I say our local therapy was "harmful", it was because my kids had to take time off of school to go to the appt (which also made them feel "different"), we paid out of pocket (ouch), and we spent an hour discussing painful issues, and got NO or VERY LITTLE results.

     

    At USF, I am not saying it was not difficult, but we got results, which made it worth it. Also it was daily, rather than dragged out weekly for months.

     

    USF was covered by our insurance, and we stayed at the RMH- so the whole shebang (ncluding flights) cost us about the same as 5 local sessions.

     

    Good luck!

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