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LNN

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  1. Like
    LNN got a reaction from ptcgirl in 23 and Me and my DS--Mind exploding messily   
    PTCgirl - I am CBS +/- so I ca't join in any wine tasting. High sulfur But that's ok, I'll sip my umbrella drink instead.
    The good news for you is there's no CBS and no VDR Taq - makes life a little simpler, tho I'm sure you don't feel that way. A quick summary of your results says you have trouble with neurotransmitters! Shocking, I know.
     
    The best way to start (for me) was to cut and paste this entire document http://www.heartfixer.com/AMRI-Nutrigenomics.htm into Word. Then delete the gene sections that don't apply to you (and the recipe fluff at the end). Then go back and really read what's left, highlight or bold things you think are important. In some cases, it can feel conflicting, especially for those of us with VDR Taq/COMT combos. But you don't have that. The other stumbling block will be when you have some genes that talk about needing methyl donors and others suggesting you need methyl users. So trying to figure out that balance requires some gut guesses based on knowing your child's personality and then being prepared to screw up along the way.
     
    Mayzoo here's the Yasko links:
    http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf
    and a helpful 1.5 hr video
    http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-
     
    The best "quickie" intro to methylation is the first few pages of the heartfixer link I pasted above in this post. But it gets very complicated and will require some studying. I've read Yasko's book twice and will now re-read it for a third time with my results in hand. But IMO, it's worth the investment.
  2. Like
    LNN got a reaction from ptcgirl in 23 and Me and my DS--Mind exploding messily   
    My vote is for a pina colada with a little umbrella on a Caribbean island..even if some gene says pineapple is bad for me.....
     
    There are a few practitioners on the FB MTHFR Support page or you can go to www.mthfrsupport.com to their find a practitioner section. The main contributors to the facebook page are not MDs - one is a chiropractor, one a nutritionist, one a PhD in physical therapy. They seem to be well versed in methylation issues but my impression (I have not spoken with any of them) is that they deal more with adults and adult chronic health problems (arthritis, CFS, thryoid, cancer, etc). I don't see mental health issues addressed as often and while I know Pandas is mentioned, it's mentioned by the parents who post and not necessarily the practitioners. So I think they might be able to offer a perspective and guide you regarding supplements, I don't know how well they'd be able to incorporate that into the saw-tooth pattern of Pans flares where sometimes you need more or less of something.
     
    Their value I think depends on your comfort zone. If you're the kind of person who really wants the reassurance that a trained professional can give, then it's probably worth a phone consult at least. I know a few people here have done consults and maybe they'll post about their experiences. I did not do a consult in part because I'm pretty happy with what I've been able to do on my own thus far. But if I get stuck, that view may change.
  3. Like
    LNN got a reaction from JuliaFaith in Which well known doctor/best for what? Spinoff from last post...   
    What is the "Pandas gene"????
  4. Like
    LNN got a reaction from momma2sethandjiji in Which well known doctor/best for what? Spinoff from last post...   
    Here's my own experiences for doctors we've seen and my impressions from others regarding doctors we've not seen.
     
    Dr K is a pediatrician who knows Pandas well and will be very helpful to those who are dealing with strep only. He is fairly conservative in his use of antibiotics in that he believes you give abx (antibiotics) for a certain period of time (few months?) and a short prednisone burst (5 days) to see if there's clinical evidence you respond to things that fight infection and inflammation. If you still have symptoms after a few months, he's inclined to pursue IVIG but feels you should only do it once, maybe a second time 6-12 months later if you need it. I don't believe he feels Lyme is an issue and will not test for it or treat it. (from what I understand).
     
    Dr L is a neurologist who knows Pandas well, will treat with long term abx if warranted, will pursue Pex or IVIG if she feels it could help (done at hospital) but does not advocate for multiple treatments or if multiple, that you give a length of time in between, much like Dr K believes. She does recognize other infections can be triggers but does not treat lyme. I respect her a lot, she will give you her complete attention and will not rush you through an appt. but she is impossible to reach once you leave her office and requires a lot of energy/follow up on your part.
     
    Dr B is an immunologist and a Pandas specialist who I believe will treat with either long term abx or IVIG. But he believes IVIG should be given repeatedly every 8 weeks. He does recognize lyme and co-infections are a big factor for some kids and he will test for/treat less complicated cases. He refers more complicated cases to an LLMD. He accepts insurance but because of that, his practice has grown considerably and you may see an assistant (nurse practitioner?) once you're an established patient. IVIG infusions are done in his office. Because he accepts insurance, his visits are more brief than some other doctors. From his current patients, I understand it can be difficult to speak with him outside of an office visit - you can use email but access can be frustrating and require some effort on your part.
     
    Dr T is a neurologist and Pandas specialist who will also test for/treat mycoplamsa but I believe he relies on standard lyme testing, which is not reliable IMO. I do not believe he has rights at a hospital to do IVIG but maybe his current patients can clarify how IVIG works through him. I believe he is in the camp that feels only 1 IVIG is generally sufficient. He does support long term abx use. He can be very difficult to reach for followup questions. He has recently been exploring genetic testing but I don't know if that has altered his treatment protocols.
     
    Dr O - is an MD autism specialist (DAN doctor) who also understands/treats Pandas but with abx. I don't believe she uses IVIG. She, more than the others, will make supporting the gut and the body's systems (e.g. methylation) a primary part of treatment, along with abx. She recognizes lyme as a possible issue but it isn't her specialty and if lyme is one of your infections, you may need a second doctor on the team.
     
    LLMDs - Lyme Literate MDs - as a group, they believe in long term abx, often using more than 1 abx at a time, to treat stealth infections. They, in general, will consider/treat things like mold, fungal/yeast infections, parasites, lyme co-infections like bartonella and babesia, believe in diet changes and the use of supplements and herbs as a secondary (or maybe primary) method of treatment. They can get a little "out there" with their ideas and approaches but they see this as a long haul journey and sometimes have ideas that conventional docs might scoff at but have been exactly the thing certain kids have needed. Like Dr O, they tend to look at the whole body as a system and will emphasize diet and environmental aspects along with things like abx.
     
    I believe all of the Pandas docs support/will order the Cunningham labs. Some LLMDs may.
    Dr O and the LLMDs are most likely to look at metals, copper, methylation issues. Dr T may as well but I have sometimes questioned his approach on this topic. Doesn't make me right. Just giving my opinion.
     
    I have yet to find any single doctor who can meet all my needs - no Prince Charming. Some of us use more than one doctor on the team for that very reason. Generally, no one is going to explore all of these issues. But some may be more willing to order tests on your behalf and support you as you try to connect dots yourself. No one is going to drive the bus though, except you. You are going to have to do a lot of research on your own.
     
    With lyme in the picture, I've had the best luck with our LLMD. He's been able to do the most for my kids. We thing lyme may be out of the picture now but he'll continue to be my son's Pandas doctor for as many years as we need support. If I had funds left, I'd probably add Dr O as our second doctor. Others here will have different opinions. Some absolutely love one doctor or another. it's like dating - find the right match and life is good. But since you're looking for someone who will cast a wider net beyond pandas, it sounds like you might be best served by an LLMD (good ones can be found between DC and CT) or Dr O.
  5. Like
    LNN got a reaction from Kathy4Him in Lemon Balm update   
    Kathy, you may want to get a list of the genes that are tested and compare it to 23andMe, which is only $99 and is a spit test (requires about a 1/2 inch of spit in a collection tube). 23andMe tests CYP1A1, CYP1A2, CYP1B1, CYP2A6, CYP2C9, CYP2C19, CYP2D6, CYP2E1, CYP3A4, GSTP1, SOD2 A16V, NAT1, NAT2 (various snps of each gene). There are 990,000 snps tested so PM me if there are specific snps or gene mutations you're looking for that I didn't list and I can tell you if 23andMe tests for it. Not pushing this particular company, but it's $1050 cheaper. The one downside is that it takes 8 weeks to get results.
  6. Like
    LNN got a reaction from moosiebell in Zinc/Copper revisited   
    Moosiebell - we use Solaray Copper 2mg daily (but have used other brands with equal success). The B6 comes in the form of P-5-P in CORE http://www.retailbiopure.com/Core-240-Capsules.html
  7. Like
    LNN got a reaction from Teri in I flipped out - Bad Mommy Moment   
    I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts.
     
    The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I.
     
    So don't beat yourself up. I think you did the appropriate thing.
  8. Like
    LNN got a reaction from EmilyK in I flipped out - Bad Mommy Moment   
    I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts.
     
    The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I.
     
    So don't beat yourself up. I think you did the appropriate thing.
  9. Like
    LNN got a reaction from sf_mom in Calling Dr. Bombay, calling Dr. Bombay   
    My DD may face tooth extraction in the coming years - mouth too small for so many adult teeth. So I did a little googling and found that it's MTHFR C677T that gets mentioned most frequently with anesthesia issues
     
    http://www.ncbi.nlm.nih.gov/pubmed/18580170 Influence of methylenetetrahydrofolate reductase gene polymorphisms on homocysteine concentrations after nitrous oxide anesthesia.
     
    Yet, DD and I both have MTHFR C677T +/- and we've both had anesthesia for endoscopy/colonoscopy and I've have NO for wisdom teeth extraction without issue. Ironically, my son, who has neither MTHFR nor CBS issues is the one who's gotten upset, disoriented and thrown up on me after anesthesia for his T&A
     
    But I did find this article
    Anesthesia and the Autistic Child http://www.autism.com/index.php/pro_anesthesiaThis was just a quick search. If anyone else finds good advice, please share.
  10. Like
    LNN got a reaction from SSS in Zinc/Copper revisited   
    It feels like lately, my role is to help others learn from my "mistakes" and that my poor kids are little science experiments. First, I overdose my DD with too much methylfolate and watch her turn bipolar on me. Now, I seem to have forgotten my promise to keep an eye on balance and through my laziness, caused a bout of OCD for my DS,
     
    For those who don't know or remember, my son has battled Pandas since 2008 and Lyme since 2010 (tho he probably had undiagnosed Lyme before Pandas - it just took us 2 yrs of Pandas treatments - with mixed results - to find it).
     
    He had a great school year and really seemed to be recovering from all the years of illness. School work was coming easily (which as a huge improvement), friendships were blossoming, he was hitting his stride. I was starting to think we were done with the horror story. But then in Feb, he started having OCD issues - but with no recent illness, no swollen glands or congestion or any physical signs of illness. No brain fog or muscle pain or any other symptom other than OCD, which was very strange for him he has always suffered from the whole Pandas package while in a flare. Already on zith+rifampin for lyme, we added augmentin. No change either way. Just this "mild" OCD - maybe a 3-4 on a 10 pt scale.
     
    For the past two months, I've been wracking my brain. We tested for yeast - negative. We tried a homeopathic detox remedy - no change. We rotated probiotics, stopped many supplements, tweaked others - no change. I even stopped abx, feeling like we might be done with lyme and that they might be contributing to some gut imbalance. Still no change. Then I looked at his 23andMe results - he has three gene mutations that conspire to make him very high in dopamine and serotonin. So I started looking at one of the genes - MAO-A (you've heard of this gene on the drug commercials that say "don't take this medication if you use an MAO inhibitor" - which means an anti-depressant). And I started looking for the opposite of an MAO inhibitor, something that would help him use up dopamine faster, not slower. What I found is that copper plays a role in MAO-A's ability to degrade dopamine.
     
    DIng, ding, ding. My son also has a condition called pyroluria - a condition that makes his body excrete zinc and B6 at a higher than normal rate and creates a zinc deficiency not easily detected in regular blood tests.. This is likely a life-long condition for him, as it is for me. So he takes a very high dose of a zinc/B6 supplement called CORE every day. Zinc and Copper are ying/yang metals. If one is high, the other is usually low. For the first 18 months we treated the pyroluria, I was good about supplementing copper in addition to the CORE to keep things balanced. But if my son takes copper with any other meds, he throws up. So as he got busy with after-school activities, which was our copper time slot, we started skipping the copper. It's probably been months since he took any. On a hunch, I re-started copper. After 4 days, he says the OCD is far milder. Not gone yet, but hardly had any compulsions at school and it only bothered him once he got home and wasn't busy. Hoping this is it, that the copper is helping him degrade neurotransmitters faster.
     
    So I post as a reminder to everyone using supplements - remember to keep an eye on balance. Happily, the past few months forced me to stop and re-evaluate supplements that at one point served a purpose but now aren't needed any more. I've cut out about half of the daily pills, including antibiotics. (I was the Queen of Supplements for a very long time). Hoping to only use abx at the first sign of an infection, as a kind of triage, but to remain off of them for as long as we can manage. Fingers crossed.
  11. Like
    LNN got a reaction from MomWithOCDSon in Glass Children   
    This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible.
     
    In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind
     
    http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re
  12. Like
    LNN got a reaction from filinha1 in Glass Children   
    This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible.
     
    In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind
     
    http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re
  13. Like
    LNN got a reaction from JuliaFaith in Glass Children   
    This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible.
     
    In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind
     
    http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re
  14. Like
    LNN got a reaction from kimballot in Anybody up for an educational campaign?   
    So I sent an email and it was forwarded to the Editorial Director who manages the web site. I received this response:
     
    "Thanks for the information and the links, which are excellent. I will take down the "myth," which reflected the thinking of our OCD specialists when we wrote the guide. And I think it's a good idea to do a story updating our understanding of this, based on the work Sue Swedos and others have done to redefine the syndrome and update the critieria.

    Please thank your friend for alerting us to the problem. It's very helpful. Above all we don't want to pass on misinformation."

    Caroline Miller
    Editorial Director
    Child Mind Institute
     
    If you have time, please write a brief note thanking them for their prompt action and willingness to learn more! (and please take their quiz - they earned that dollar IMO).
  15. Like
    LNN got a reaction from SSS in Am I being dumb but where did the Lyme forum go?   
    JPdad - I have to disagree and PANS and lyme being two different things. Pandas was renamed PANS due to a number of parents reporting back to Swedo et all that Lyme and mycoplasma and other things were triggers. The Lyme spirochette and the strep bacteria both share very similar M proteins on their outer surface which show up in research as potential agents in molecular mimicry, as the basal ganglia, heart and other human organs have similar-looking M proteins. So biologically, there's a lot of similarity between the two bacteria and how they may cause neuropsych symptoms. Yes, they are two different bacteria, but cousins in many ways. So Lyme is part of the PANS umbrella.
     
    That said, as Rowingmom points out, the treatment paths can be different and I can see where those conversations would be frustrating for a non-lyme parent. But not much different than my needing to skip threads about IVIG - I don't share the majority view on that particular treatment and so I avoid those threads as I usually have little to contribute to the discussion.
     
    I like the idea of having one place to share conversations about methylation, diet, detox et al. But if having one combined forum causes people to stay away, that would be unacceptable. But it is interesting that for the past few weeks, conversations on both forums had died down. Since the upgrade and combined forum, the conversation seems re-invigorated. Maybe it's a short-term effect. I didn't see the FB thread but I too cringe when I hear sweeping comments about Lyme - and I'm a lymie. It makes me shy away from posting anything on FB - the whole tone is snarky and catty and I hate having conversations in sound bites. Which is why keeping this forum a "safe haven" is so important. The more forums I visit, the more I appreciate how unique this forum is in terms of civility and educated parents. Regardless of whether this stays one forum or goes back to two, I certainly appreciate having this place to call home. If it weren't for all the zany, geeky, passionate ideas that have been thrown at me over the years, my kids would not be (almost) well now.
  16. Like
    LNN reacted to airial95 in Show Cooperation and Kindness on the PANS Forum or be Banned   
    LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!!
     
    But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil.
     
    And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!
  17. Like
    LNN got a reaction from Administrator in Show Cooperation and Kindness on the PANS Forum or be Banned   
    Couldn't agree more. I think it's fine for one or two posts about lyme & co. especially to a newbie or to someone who posts about symptoms that are less than traditional pandas (e.g. drenching night sweats that could be babesia and isn't common to Pandas and perhaps a parent doesn't have that info yet). But we aren't here to diagnose or "convert" others. Throwing out ideas to explore is different than badgering and tone of post is critical to the health of this community.
     
    I think it's important we self-police and if you see a thread taking a negative turn, I hope everyone feels comfortable speaking up and respectfully reminding us to get back on point. Would hope to see "some things to consider consider," "in my experience," "maybe" and not "should," must," "definitely"... Same would go to PMs - if a parent chooses not to pursue your thoughts in a public thread, please don't continue to badger in a PM.
     
    I have strong feelings about certain topics within Pandas based on personal experiences. Sometimes I try to insert an "opposite" view for balance but if I ever come across as too negative or disrespectful, I'd hope that someone would let me know (in a kind way). I belong to a FB group that struggles with the same issue. For the most part, there's tolerance but unfortunately, some forget to rein in their passions. Let's let this pull us together and not apart.
  18. Like
    LNN got a reaction from Sheila in Show Cooperation and Kindness on the PANS Forum or be Banned   
    Couldn't agree more. I think it's fine for one or two posts about lyme & co. especially to a newbie or to someone who posts about symptoms that are less than traditional pandas (e.g. drenching night sweats that could be babesia and isn't common to Pandas and perhaps a parent doesn't have that info yet). But we aren't here to diagnose or "convert" others. Throwing out ideas to explore is different than badgering and tone of post is critical to the health of this community.
     
    I think it's important we self-police and if you see a thread taking a negative turn, I hope everyone feels comfortable speaking up and respectfully reminding us to get back on point. Would hope to see "some things to consider consider," "in my experience," "maybe" and not "should," must," "definitely"... Same would go to PMs - if a parent chooses not to pursue your thoughts in a public thread, please don't continue to badger in a PM.
     
    I have strong feelings about certain topics within Pandas based on personal experiences. Sometimes I try to insert an "opposite" view for balance but if I ever come across as too negative or disrespectful, I'd hope that someone would let me know (in a kind way). I belong to a FB group that struggles with the same issue. For the most part, there's tolerance but unfortunately, some forget to rein in their passions. Let's let this pull us together and not apart.
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