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Everything posted by nitshel

  1. I've been thinking about something and wanted to share with the forum. I know our kids have some defective genes and we're trying to get around those issues but my hypothesis is that EVERYBODY will have mutations. In fact I'll bet that there are a bunch of people - adults and kids who have the same mutations as my DS but they are perfectly normal. So this means that there is some other mechanism in place - epigenetics (environmental factors that turn genes on / off), infections, immune issues, too much hygeine...I know this is a very young field of research but it just seems like "bad genes" is not really the cause of this - its probably a bunch of circumstances that came together....
  2. Quick Q - probably directed at LLM since she's one of the smartest on snp's :-) > Here's some guidance on the MTR A275G mutation (heterozygous for our DS). : http://mtra2756g.com/ While it talks about methycobalamine and methylfolate (which all line up with what we have been reading) - there's no mention of the hydroxy B12 which other articles point to being more relevant with someone who has COMT (+/+) "Conversely, if you are COMT (+/+), we know that you have an excess of methyl groups floating around. We will give you hydroxy-B12, expecting it to combine with the methyl groups available to form the methyl-B12 you need (without ODing you with too many free methyl groups)." So......Any thoughts on what form of B12 is best recommended? On the moly thread above...the heartfixer article recommends 75 mcg Moly TWICE a day - is that an adult dose? "Sulfite is neurotoxic. Sulfite will be over produced by the CBS up regulation, and then requires conversion in to the less toxic sulfate molecule by the enzyme Sulfite Oxidase (SUOX). SUOX can easily be overwhelmed. Molybdenum is required for SUOX function, and is typically depleted in CBS (+/+) or (+/-) individuals. Molybdenum supplementation (3 drops or 75 mcg of e-lyte Molybdenum twice a day), Boron 3 mg/day, Vitamin E succinate 400 IU/day, and hydroxy-B12 2000 mcg/day are also utilized to speed up SUOX activity."
  3. Thanks All -special thanks to LLM for joining the dots with the snp's. Looks like we're stuck with Motrin for now....although I recall Dedee has discovered something on Holistic Health that was a potential replacement for Ibuprofen....
  4. Hello all, Does anyone know if there are supplements out there that can do the job of Ibuprofen (Motrin / Advil) over the long term? DS responds well to Motrin but Ibuprofen is not recommended for consumption for an extended period so I wanted to poll the forum to ask if anyone has good results substituting it with something else...Enhansa? Other?
  5. Thanks all - One of the hurdles we face is that we havent seen any tests come back positive so we're using Abx as a broad spectrum thing. DS has become more and more "classic" PANS - right now he has a flare going on - flu symptoms, bedwetting, vocals coming back and mild OCD (picking his nails). One theory we have is that the infection is hiding out in his sinuses...is there a test or treatment to see if that theory holds any water?
  6. LLM - when you began the methylayion protocol did you do it in parallel with say Abx or antiviral / anti-yeast to get rid of infections? Any thoughts on whether such a combo is better - or not? At the moment whatever we throw at this from a medicine perspective has had limited results -which is why we strongly suspect a methylation problem - but are not sure if we should clear up methylation before Abx or if its OK to go with both together...
  7. Dedee - no judement at all - we all gotta do what we gotta do...totally understand where you're coming from....our DS is also backsliding - flu like symptoms, bedwetting, increased vocal tics - and we are going crazy with what could be cusing it - we're oping the methylation helps.... LLM - Did you also go on the gluten and dairy free diet? Because going GF and Dairy free along with sulphite limitation is near impossible to pull off... We ordered the Moly from Yasko's site and should have in next 24 hours...praying it will help... Blessings to all....
  8. LLM - One more Q - Genetic GENIE in its text says to get a "UAA" test baseline ordered before treatment for CBS (via Molybdenum) - did you get this test done? If so did insurance cover? Thx!
  9. Thanks all - DS is also on Motrin for the past 2 weeks and we need to take him off since it is toxic in long term. Dedee - any side effects or that sort of thing with cytokine RNA?
  10. LLM, Dedee - Many many thanks! > LLM - How much Molybdenum and can I get it from say, Whole Foods? Ditto for the l-methylfolate? > I dont know if we can wait 6 weeks for CBS - can we begin parallel supplements (i.e. Moly plus l-methylfolate) and GABA (see below) Dedee - Thanks for the GABA tip. Reading this line made me think of DS immediately "Low GABA leads to impaired speech, anxiety, aggressive behavior, poor socialization, poor eye contact, nystagmus, and constipation" He had also come back with high levels of Aluminium - not sure where it could have accumalated from but it "poisions" GABA as well Can I get GABA from Whole foods as well? Is there a particular form / brand? We will start low on all of these and see what happens... Thanks again!
  11. Hi LLM and everyone, We got our 23&me / Genetic Genie results yesterday and need some guidance. Here are DS' homozygous mutations (i.e. +/+) COMT V158M COMTH62H MAO A R29 Here are heterozygous ones (+/-) VDR Bsm VDR Taq ACAT1-02 MTHFR C677T MTR A2756G MTRR A66G MTRRH59Y MTRR K350A BHMT-02 BHMT-04 CBS A360A > So, in short it looks like the COMT +/+ mutations are rocketing up Dopamine (which explains tics and why Risperdal (dopamine blocker) works for DS) > According to Yasko, MAO +/+ combined with COMT +/+ depletes tryptophan stores and there are a few ways to increase serotonin - has anyone tried these (e.g. Mood S RNA formula) A few questions for the experts out there... 1. We jsut have one CBS mutation (heterozygous +/- - should we address that first? 2.I know the VDR Taq plays into the COMT conversation but am confused how they relate 3. LLM - reading the heartfire document is hard because of the interplay between the genes...and the diet seems nearly impossible to do!! Any advice, thoughts? Much appreciated!!!
  12. Hi So we know about Yasko's book and the Web site but were wondering if anybody here knows Of a Dr. who is a methylation expert. Many thanks for sharing.
  13. Thanks Universe123. What we did was to put DS on Diflucan and Motrin (2 tabs 2x day) and literally in 48 hours we saw an 80% decrease in tics. The tics are by no means gone - but they are back at baseline - still bad but in a place we can deal with. We dont know if it was the Ibuprofen or the Diflucan (likely both) but we are talking to the doc in a couple days and will let you know what he says. We've been told that Ibuprofen is like a "poor man's Cunningham test" os if the improvement is partly / wholly driven by it then we can be pretty sure its PANS. What I'm less sure about is what we should do next. Ibuprofen is not recommended long term - so is the answer to go back on Abx (but also take Diflucan and probiotics) -or some other more sustainable strategy....
  14. Over the past few days as these tics have spiked (despite ceasing the Abx) we've found some behavior changes 1. Handwriting getting worse 2. A bed-wetting episode when tics were bad 3. Separation anxiety / anxiousness and easily upset Are these symptoms consistent with PANS as I think they are? If so, we're confused - wouldn't we have wiped out much of the bacteria / lyme and viruses with the multiple weeks of Abx and Valtrex? We figure it has got be the Lyme (3 wk cycle) or some kind of methylation problem....or both...or maybe its just a side effect of Abx use (e.g yeast). This thing is such a riddle - I really wish we get some answers soon.... Blessings to all...
  15. LLM - Thanks for the excellent resources and summary - a wealth of guidance here - very much appreciated!!
  16. Thanks LLM - on a separate thread I've mentioned that we decreased - and then today ceased Abx to get DS stable again - we might restart Abx later but right now he is not in a good place. Not sure why Abx would have this pattern - very slow improvement in first week or two followed by a terrible spike in week three. I wish we could tough it out but it does not seem to be subsiding and we dont want to increase Risperdal....so the only choice is to back off on Abx for now... We still hope to find the trigger...or some combination of supplements/medicines that work but we are not there yet after almost a year..... Many thanks for your good thoughts and advice - we need all that we can get these days..
  17. Thanks LLM - its really hard to not do anything when DS' tics are so bad...I feel we need to do SOMETHING - breaks my heart to see him like this - we're all a total mess these days. We've stopped Abx for now because the tics have gone through the roof...
  18. Hi- Am new to this thread (came over from the PANDAS thread) but am curious. We feel that our son may have methylation issues. We had sent saliva to 23&me but were told we need to send another sample in - this will take another 6-8 weeks. Some questions: 1. While we wait for 23&me results, can we start off with the methylfolate+methylB12 combination (small doses and work our way up)? Is that a good place to start methylation from - or is there another set of supplements preceding this that are more foundational? 2. How long after the methylation supplements does one see a benefit typically (if there is such a thing as "typical" with our kids) 3. Where does one buy the methylation products from? Whole foods?
  19. Thanks everyone. We did have DS on Diflucan but that was a while ago - perhaps we need to get another dose in... Other than that nothing has changed, we didnt add any new supplements, foods or medication and DS does not have any allergies in this season. The only heavy metal that showed up in the last screen was organic Arsenic - Dr T told us this was probably because of seafood (which our son loves). We had cut back on that just in case. @LLM - I completely agree that we need to find the root cause. There is no history of TS or neurological issues in either side of the family and DS has never had a head injury or childhood trauma - so we keep looking for the underlying infections agent. I just wish that some test - any test (and we have done dozens) came back with a clear and obvious indication of what is going on....
  20. Update - DS is now in 3rd week of Augmentin + Azith combo. We saw very gradual improvement and then bam - last three days have been terrible. Vocals came back and quickly became coprolalia. We are beside ourselves with worry. What could be going on? Is it normal to get herxing weeks into Abx (if this is even herxing). Any ideas? With school starting soon we need to have a plan - poor guy has laready missed most of the summer cooped up because of this condition. He is already at 2 mg Risperdal - we dont want to go any higher - but we fear that the Abx could set a new "normal" and we will have to up the dose. And the worst part is we STILL dont know what the underlying problem is..... Any ideas from the experienced folks on this forum?
  21. Hi Ifran - yes we actually did visit with Dr. Stack. He did ask us to take the "popsicle stick test" at home. It's hard to tell whether the test works because son's tics do not come at regular intervals - they come in a large batch suddenly - and its hard for a 7 yr old to keep the popsicles in his mouth for more than a few minutes. We might get an MRI done - that might be a definitive test - will update this thread with what we find... Thanks to all for support and advice....
  22. Hi Missmom - he used to be a bit of a germaphobe when he was younger but not much bothered by it now. Its really as though the act of opening his mouth triggers something. Son's appetite is good - partly due to the Risperdal he is on I suspect. He is off gluten and dairy and limited sugar. We thought of getting the food allergy test done but I hear those are rife with false positives so right now we are doing the elimination diet. Beyond the gluten , dairy and sugar I fear that any more restrictions will likely take away whatever childhood pleasure he has so we are taking it slow. Still looking for a "cause"/trigger after 9 mnths. Also its been 8 weeks and we have not got 23&me back - hopefully that will shed a light on possible methylation issues.
  23. Just encountering some strange puzling behavior - we are now trying to eliminate with antibiotics. We are working with Dr. T. I am writing because we are puzzled about his tic triggers. He seems to be doing a little better but when he sits down to eat or brushes his teeth, his tics come back. When he sits down to eat, he starts to grimace and his vocal tics (repeated random word utterances) come back. When he brushes his teeth, his vocal tics come back. As these are triggered by some actions - like eating and brushing - I am wondering if Dr. Stacks (VA) work is worth looking into. DS is on Augmentin, Zithromycin and anti virals. Hope any one of you here can help us with this puzzling behavior. Many thanks Nitshel
  24. @ Mama2Alex: Apparently Advanced Labs sends a preliminary result in 10 days - in our case it was "Indeterminate" so now they will culture the blood for 8 weeks and provide a definitive answer We have now noticed that son's tics (both vocal and motor) get much worse while 2) Chewing food and 2) Brushing teeth - can anyone hazard a guess why this might be? Could there be a TMJ connection (Temporomandibular joint)? BTW we did go to Dr. Stack (who specializes in treating tics with a dental device). He put some popsicle sticks in our son's mouth to see if tics subsided - didn't seem to make much difference - but then our son wasn't ticcing much in his office so it was hard to tell. Any theories to explain why our son gets worse while eating and brushing teeth would be useful....these are unusual "triggers".... Thanks!
  25. Hi Our son has tics that we are now trying to eliminate with antibiotics. We are working with Dr. T. I am writing because we are puzzled about his tic triggers. He is fine mostly but when he sits down to eat or brushes his teeth, his tics come back. When he sits down to eat, he starts to grimace and his vocal tics (repeated random word utterances) come back. When he brushes his teeth, his vocal tics come back. Otherwise he seems to be doing better. As these are triggered by some actions - like eating and brushing - I am wondering if Dr. Stacks (VA) work is worth looking into. DS is on Augmentin, Zithromycin and anti virals. Hope any one of you here can help me with this puzzling behavior. Many thanks Nitshel
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