LNN

I'm sorry you haven't seen faster results - I know how disappointing and frustrating it is. You go thru so much preparation and expense and move heaven and earth and then.... you pray to see signs you'll be repaid by getting your son back. We did both Pex and IVIG but not back to back. It didn't "work" for my son except that the failure led us to finally find lyme, which I wasn't willing to consider before then. So regardless of the progress of lack of, you've now done tings that will give you a lot of information moving forward. But I'll still keep my fingers crossed for you that see more good things ahead. I agree with DCMom not only about ERP, now that he may be in a place to do it. But also about the tought love. I've had more than one conversation with my son about the need to be part of the solution. He needs to own this problem with me, not expect me to do it all. Here you are, doing all this behind the scenes work and all you're asking is that they swallow some pills - and they balk?! Sometimes, they just feel like human pin cushions and are looking for some say in things. One of the best things that ever happened was when DS had to stop all meds (except abx) for a week to do a urine test. He felt so awful by the end of that week that he was begging to go back on all the supps. It showed him they do help. Now when he balks, I say "do what you want" (admittedly sometimes in a snotty voice) and walk away. he usually takes the pills within 5 min - once the choice is his. Sometimes he'll negotiate with "Mom, I'll take these three now and the rest after I do xyz". I imagine a 15 yr old looking for some say over things is a healthy sign. On the tough love, you were right to lay it on the line for him. First, you're human, not super human. It's good for him to see you stand up to him and to let him know he's crossed a line. It's good to have expectations of him and enforce them - or let him suffer the natural consequences if he doesn't hold up his end. Second, making him own his share of work is healthy. It says you believe he is capable and you expect him to rise to a challenge and succeed. It's not bad to be firm. Good for you!

23andMe does test the APO gene for Alzheimer's and at least some variants of the BRCA gene (not the ones "patented" by some other co.) but you have to unlock those results - not just with one click but on two separate screens. Do you want to see your risks? Yes. Are you sure? Yes. Much of the 23andMe info was only mildly informative. So my family has a higher risk for this or that - nothing surprising. It was stuff I already knew from family history. Nothing on 23andMe tells you what to do about any of your results, so not particularly helpful. Where the value lies for me is being able to take that data and then run it thru the various methylation apps out there and then turning to Yasko et al and reading what to do about those gene mutations. I also use it as a reference database when I read an article that says "researcher have found that those with xyz gene mutation have trouble with 123". I can then look up gene xyz and see where we stand. I don't think other genes implicated in various cancers are locked and you do get some general info on "you have a 1.2x higher than normal chance of getting this disease" than those with the wild type form of this gene. But...even here, you don't need to read the reports if all you're wanting to do is download the raw data and run it thru methylations apps. There's a separate tab for downloading raw data and you could chose to not read any 23andMe stuff if that's your leaning. (I did find it funny to see how much of my blood line comes from Neanderthal).

No - I deeply admire anyone who can go GFCF - way beyond my family's abilities. We've thankfully been able to get to a good place without major diet changes - I buy organic when I can, go to local organic farms for things in season, avoid High fructose corn syrup, but no one in my family would support me on it and I don't think I personally could do it. We do the best we can with supplements and common sense diet.

I did not do the UAA test nor do I do the strips you're supposed to pee on. As I recall, these are for measuring ammonia issues and even Yasko seems to be shifting away from the CBS role in ammonia. There seems to be lots of agreement on CBS's role in sulfite/sulfate and moly's role in that as well as in breaking down aldehyde (a byproduct of yeast, which is currently a concern for my kids). So the ammonia piece for me was less certain in my mind and frankly, after 5 yrs of various issues, I've collected too many stool and urine samples to be eager to do the pee strips. But the sulfur piece seemed like a no brainer and honestly, easier. Doesn't make my decision right. But since we've already checked for metals and gotten rid of (we hope) infections, my path was more about healing rather than fixing. Others may find the ammonia piece to be more important for them.

Dee - does your DD respond to motrin? Is the cytokine balance RNA way better than motrin? Very intrigued but choking on the idea of $170/mo - it just isn't inthe budget right now

Nitshel - I would really, really not do more than CBS for at least two, preferrably 4 weeks, especially if your DS has high aluminum. Getting the CBS cog moving again is going to start a detox process and you'll likely see some sort of behavioral issues as a result. if you add methylfolate during this time frame, you'll never be able to figure out correct dosing or what supp caused what issue. It may not be pleasant, but if he starts detoxing, adding in supps won't help until that gets under control anyway. You can talk to your doc about adding something for detox (can't recall if EDTA is ok with CBS - I know DMSA is not). Maybe a small amt of charocoal or bentonite clay, away from meds and supps. You may find he has less of a gaba deficiency once the aluminum is chelated (naturally or with meds). The forms of folate you'll find in foods is not methylfolate. It's more readily usable than folic acid, but it still needs to be converted by your MTHFR gene. Since your DS is running at 50% efficiency on this gene, and he's fighting chronic issues, I'd personally use a methylfolate supplement to make sure it was getting the job done. For moly - RDA for an adult is 45mcg. We use 75mcg for my DD8 (60lbs) who has CBS +/-. I use Yasko's moly drops so I can adjust dose (1 drop = 25 mcg). So you could start with 1-2 drops and build up. You won't be able to do that with a capsule. It's just like the methylfolate/B12 issue. I prefer to do each supp separately until we find the right dose and then look for combos that might be able to match that once things settle. So moly drops have worked well during that zeroing in period. The drops have no taste and like DeeDee, we put them into a 5ml medicine cup of water. She drinks it w/o issue.

Can't tell you how many times I ened up finding out I was actually contributing to my kids' problems instead of helping them. You wouldn't be the first mom. You could try lowering to see if it helps. I just started using a high bifido probioitc from Kirkman that seems well tolerated. It's always such a game of darts, isn't it...

Dee - does the cytokine balance work enough to part with $85? Did you dose it the recommended 3x/day?

molybdenum is supposed to help the body convert sulfites into less harmful sulfates. RDA for an adult is 45mcg. We supplement 75mcg daily for CBS. Not sure if it'll help but maybe...

I can only tell you what I'd do personally - doesn't make me right. But yes, I'd start with CBS - yasko says 6 weeks, but I understand how it can be hard to wait that long. I'd do at least 3-4 weeks of adding molybdenum, reducing/avoiding high sulfite foods and stopping high sulfite supplements (e.g. NAC, MSM, milk thistle). Yasko says to avoid proteins yet these are kids and I personally struggle with this one. First, they need balance in their diets and second, if you take out proteins in addition to high sulfite foods, it creates a pretty restrictive menu. So I've chosen to focus on limiting the sulfites and not worry a heck of a lot about proteins - I don't insist my CBS+ kid eat a lot of chicken or pork - 4-5 bites instead of a regular portion. But I don't limit cheese, ice cream etc. I think you have to use behavior as a guide. Not a pre-set lists of do's and don'ts. But that's just me. My kid is pretty stable, so easy for me to say. You have to see what your DS can or can't handle. Sorry I can't be more specific. But I've seen people tie themselves in knots over this and I just think you have to be realistic and do what you can, not be extreme. Yasko's addressing some pretty severe autistic behaviors. You need to find your own balance. After CBS, I'd expect you to have the biggest behavioral impact by moving on to MTHFR and COMT. With his COMT, MAO-A and VDR Taq + status, and from what you say about tics, he's probably an overmethylator. (His COMT + VDR + MAO-A are all making him run high in dopamine and probably high in methyl groups). So when you address MTHFR, you'll probably want to use l-methyfolate and either straight hydroxyB12 or a combo of hydroxy+methylB12 (Perque sublingual B12 uses this combo). I personally like Yasko's Holistic Health methylmate B liquid drops when you start treating with methylfolate because the drops allow you to play with doses better and it you can adjust B12 dosing separately. When you get to the sweet spot on dosing, then you can look for a combo methylfolate+B12 combo (IMO). When we went down this road, we started with one drop of methylmate B per day and 1000mg B12 (I'd suggest Perque for your DS to start with). I was so thrilled to have the exorcist bipolar child gone, I got sucked into "more is better" and built up to 3 drops/day. Big mistake. Exorcist child returned. I stopped cold turkey for a week, let things settle and then did one drop methylmate B every other day. Sweet child returned. We've stayed at 1 drop every other day since (and give methylB12 every day - DD is an undermethylator, so we don't use a combo B12 - just straight methylB12). But some kids need a lot more than this. Unfortunately, you just need to devote several weeks/months to see what works for your DS. The third step would probably be to then look at any additional balance you need to help with COMT. That might mean adding some additional methyl users, like a somewhat high end of niacin (nicotinamide). As you go along, re-read heartfixer and it will probably start to make more sense and you'll be able to see how the interplay between genes is effecting your DS. It can be very individual and is also impacted by what infections he's dealing with. If your DS has any ADHD symptoms, you may find it helpful to add phosphatidylserine (sold as PS-100 on amazon). With his BHMT mutations, this can help. As for Yasko's RNA products - I've never used them. I just can't justify the expense without being able to find any research to support the idea that they do anything. But I've also never needed to go to this step. Maybe if my kids didn't respond to other supps, I'd feel differently. IDK. I used to supplement with tryptophan but found my kids do better without it now that we've addressed methylation issues. if you chose to try it, I'd do it after you've dealt with other things - it may not be ab issue by that point. Also look into tryptophan vs. 5-HTP - conflicting stuff out there on which works better to raise serotonin. Again, I'm not a doctor and give these suggestions without knowing your son's medical issues or medications. If something I've said doesn't make sense to you, follow your gut. I only know what's worked for my family. Hope this helps.

49 w/an 11 yo and 8 yo. I think the younger crowd (and many old timers who used to hang out here) has migrated to the FB support page. I don't think it's our age that contributed to Pandas - some moms I know are in their 20s and early 30s - it's more that us "mature" women may be drawn to the format of Lats over the sound bite format of FB. I can't explain myself in hash tags.

As an alum tarheel, I get monthly newsletters from UNC. This research was interesting enough to pass this along for those whose kids who are affected. http://www.unc.edu/campus-updates/researchers-discover-a-possible-cause-of-autism/

Nancy - I'm shocked but of course glad the metronome helped last night. I'm sure you have a good handle on the ERP aspect of whatever you devise. But from the ADHD world, I'll toss out this thought. In the ADHD brain, it acutally helps to multi-task. To ask the brain to do more than one thing at a time because it's the bored brain that gets distracted. So ironically, chewing gum or sucking on a hard candy in class helps ADHD or ADD kids focus. So do fidget tools like reading while fiddling with a rubber band wrapped around your index fingers or playing with silly putty or rolling a ball of rubber cement between your fingers. Or reading while listening to music with head phones or ear buds in. It's very counter-intutitive but it really helps. Perhaps the OCD brain is a little like the ADD brain - give it too much time on its hands and it allows elbow room for OCD thoughts. So maybe the sound of the metronome or some headphones or a fidget tool could help. Maybe put a ball of rubber cement on the edge of a ruler and let him play with the cement whie using the ruler as a slide bar on the line of text he's reading. Or change it up. Normally, I'd agree that straight ERP is the cleanest approach. But since you need his full participation and neither of you have control over when his mind wanders until it's too late, maybe keeping the OCD part of his brain distracted while he reads dry textbooks will help.

I am not a good one to be giving advice - my kids still have sleep issues and they're 8 and 10. I always chose sleep over principal. So DH and I aften gave in and slept with the kids instead of being woken up repeatedly. If I fall asleep for more than 15 min and then get woken up, I'm up for hours. So I personally couldn't fight this battle while also being expected to be compassiontate during the daylight hours. The good news is that as the 10 yr old has gotten older, he has learned to sleep alone pretty easily now and only rarely will come in an hour after I thought he was asleep and tell me intrusive thoughts are keeping him awake. The 8 yr old is also getting better, but not quite as successful. So sleeping alone is in the same category for me as thumb sucking and pullups. I doubt any kid will walk down the aisle for his/her wedding still sucking a thumb or wearing a pullup or sleeping with a parent. So when PANS was on the front burner, where everyone slept was a whole lot less important than the fact that we all got enough sleep to be kind to one another all the other hours of the day.

Pr40 - you may need to really push. Many optometrists do not test for it or do so in a cursory way. Ironically, our pediatrician diagnosed my DD when she was 4. We were sent to a pediatric optometrist who never addressed the CI but instead prescribed galsses for an astigmatism. DD always said the glasses didn't help. I finally learned more thru a lyme friend and went to a behavioral optometrist who dx'd both kids with CI and gave them both bifocals with prism lenses. (My son has 20/20 vision yet still has CI - no other optometrist ever tested for it, despite his reading problems). Both kids felt reading got easier with the glasses. My son in particular jumped several levels in his ability and comprehension. DD did 24 weeks of vision therapy and went from the 1st percentile to the 60th percentile in many areas. In some areas, she's still weak but better than where she started. The optometrist would like to do 12 more weeks but I need to squirrel away the money first. DS should also be getting therapy but funds don't allow at the moment and since al the money has gone toward his medical needs, it was his sister's turn to get the funding on this one. But we are doing the home exercises with both kids. It was a good investment for us. Here's a good site http://www.childrensvision.com/reading.htm

There should be two pages of results for Igenex - one for IgM and one for IgG (plus maybe a cover page) Also - it isn't just the lab results alone. They need to be considered along with symptoms. If someone has + bands but no symptoms, it doesn't make sense to pursure treatment. but if they have some positive bands and a lot of symptoms, it's worth treating even if the overall result doesn't produce enough + bands to give you an overall positive. So it has to be taken in context and considering his repsonse to previous treatments/approaches.

Are the bands you list as positive IgM or IgG? Yes, you can have babesia without lyme and the Igenex test for lyme does not test for babesia. You'd need a separate test.

We stopped treating lyme 4 months ago and I st ill can't bring myself to say "he had lyme" - I still think of it in terms of he may always have a little lyme - not sure you can ever eradicate all of it after 3 yrs of undiagnosed infection. But for now, his body seems to have reached a detente, a truce where his own body seems to be able to keep things in such a balance that it isn't an issue demanding our attention right now. Maybe that's PTSD on my part. or maybe I'm just trying to prepare for what could happen if his health declines or he needs to fight some other infection and the detente fails. IDK. But like you, our focus is on healing the gut right now, not on killing spirochettes. Since your DS is on combo abx and you're only seeing flares with strep, then I think I fall where you probably do - maybe it's gone, maybe it's not, but for right now, it's probably ok to maintain status quo and focus on healing, steps like diet and foundational health. If any lyme is left, it could be lowering his threshold for his ability to fight strep, but based on your labs and his cyclical flares that correlate to strep, not some 4 week cycle, it'd be a back burner, sticky note in my mind sort of thing. Don't think you need to fight for additional abx or treatment aside from Pandas at the moment. JMHO. FWIW - you may find value in a Metametrix stool test if you haven't done one. We found Sacc B in my DS's results and our LLMD initially blew it off as no big deal, until I told him the DS reacts strongly (in a negative way) to Sacc B probiotics. LLMD was surprised but then said, well, then I guess we might have found the source of DSs lingering OCD. Now awaiting "pre-appoval" for difluan Rx. Pre-approval for a yeast treament? Seriously? I digress. I think for now, I'd go with your current plan and only dig this up again if he starts flaring for no other apparent reason. Others might disagree with me, but without any flares not associated with strep, and a current combo abx protocol, what would you do to treat lyme that you aren't already doing (other than maybe rotate abx if his strep flares weren't resolving)?

Tu4four - toxoplasmosis is treated with antimalarials and abx. You may find that some of the things your DD is on would also be appropriate for toxo. But you may also want to discuss with your LLMD how aggressive her current treatment is. It might be that it's too much too soon. Maybe a lesser dose of things, or a pulsing schedule (some days on medications, with some days off, in a rotaing schedule) may be helpful.

Bees - I guess I'd interpret your DS's results in terms of symptoms. There are reasons IgM can go away, like maybe you actually got rid of the infection! Or maybe the lyme is in cyst form or a biofilm form and the immune system can't see it and so isn't producing antibodies to it even tho it's still there in "stealth" mode. So interpretting the labs depends on what you've done in the past in terms of cyst-busting, films and most importantly, his symptoms. Where are you in terms of treatment and behaviors?

Two ideas came to mind - the first may be a total fail but it comes from the exercises my kids do for their CI. On several exercises, they have to read out letters to the sound of a metronome - it helps them keep pace. It could help, or it could be totally distracting. But thought I'd toss it out. You can google and download metronomes for your PC (free). The other idea your DS may ballk at because it's what my kids did in 2nd grade, but if he's struggling enough, he may be willing to try it. Take a firm piece of paper - posterboard or a cereal box weight. Cut it the width of a typical text book page and the height of maybe half the page. Then cut a window in it that will allow one sentence to show thru. Slide the window down the page as he reads, blocking out the other sentences above and below. This helps kids with CI because their eyes are prone to jumping off the line they're reading and they lose their place a lot. But if the surrounding text is distracting your DS for some reason - OCD or adhd or something else - then blocking everything else out would serve the same function as blacking things out with a marker but not destroy the textbook. Ok - one more idea - Kindles have been a big help for my kids because they can enlarge the font and change the brightness of the background. Maybe check with the IEP team and see if electronic versions of the textbooks are available for an e-reader?

I'm not clear on how long you treated lyme or what led you to that (test results? rash?) but my DS did lyme treatment for 2.5 yrs before he could stop abx. So it's possible lyme & co is still a factor. Not everyone can handle bactrim - it's a sulfur drug and for some people, it can elevate toxins and possibly raise ammonia levels if you can't procees sulfites properly. Tho bactrim was great for my DS, it may be that you need a different abx. I hear you on rabbit trails. But one thing that stood out from your post is your DDs blatant risk taking behaviors - like she's driven to do these extreme behaviors that are out of character. I know tween years are upon you, but it sounds more extreme than that. The one infection I know that can cause high risk taking behavior, even life threatening behaviors - is toxoplasmosis. You may want to read this article about a researcher who contracted it and how it derailed his behaviors. http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/ The other thing that strikes me is that you've certainly tried dozens of things that haven't helped. If psychotropic drugs aren't working, then it seems logical to consider a physical cause - either infection (perhaps lyme or toxoplasmosis) or methylation. I often think sound like a broken record on this topic. But we went down the Pandas/lyme path for my DS and it brought him back. It didn't really get to the root of my DDs mood and behavioral issues. When we did genetic testing ($99 spit test), I was able to customize supplements for her that literally saved her from a bipolar dx. She's been in a great place mood wise for over a year - so it's something I'm a little fanactical about. You can search methylation posts or PM me if you'd like some links to read. I'm sorry I can only offer a few ideas but I do hope you're able to find some things that might help you come to an answer that helps your whole family heal.

There will be a free webinar hosted by the International Bipolar Foundation on Nov 14 talking about natural supplements to treat bipolar symptoms. Weird that it's being given by John Gray, author of Men are From Mars, Womaen are From Venus, but it's free and just might have some useful info. So I thought I'd pass it along http://www.internationalbipolarfoundation.org/ (scroll down until you get to the Gray webinar)

If the product you've linked were for an adult, I'd tell you to cut it in half and then build up to a full pill over several weeks. But for a 4 yr old - IMHO you won't be able to slice off a reliable section of the pill every day (so dosing would be inconsistent) and the sliver you'll end up with may crumble and not lend itself to being sucked on. For kids, I find the methylfolate drops much easier to take (I put 5-10 ml of water into a medicne cup - the kind that comes with liquid medicines) and add one drop of the methylfolate. My DD then drinks that and sucks on the methylB12 lozenge. MethylB12 is poorly absorbed orally - some estimates say only 10% makes it into your system. So sucking on 1000mcg of methylB12 may not be as high as it sounds. I don't know if it's medically acurate, bu my impression from my own experiences is that it was the methylfolate that stabilized by DDs mood and the methylB12 that gives her energy. They need to be taken together, but for mood issues, IMO getting an accurate dose of methylfolate is the more important of the two and the drops are the best way to do that. There's no single "right" answer but I think for young children, you're better off with drops rather than trying to use a combo product. I know some older kids here use the combo product (Thorne makes one as well). But at least while you're trying to figure out what dose you need, I'd do the first few months with the drops and then see where you're at. Maybe then a combo sublingual would make sense. JMO.

JAG - you had me ready to grab my credit card and call 1-800-get-gaba - until the end of your story. You know I'll be following your story closely! What dose of Gaba? Would a lesser dose, or a split dose given more often, be worth trying? Fingers crossed for you - and keep me posted! As a side note, we'd talked about ashwaganda - and I wasn't sure it was helping my DD with her insomnia. So I stopped it last week. Lo and behold, her insomnia is back. So I've restarted but it may take another week before I'll know if adding it back helps. So if the gaba ends up working for you "too well", becking down Dr O's list of things to try might be worth reconsidering. We're using it for insomnia, not glutamate, but just a thought...