LNN

Yes, Tryptophan comes as a supplement - here's one I've used http://www.amazon.com/Source-Naturals-L-Tryptophan-500mg-Capsules/dp/B000GFSVS2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1353503703&sr=1-1&keywords=tryptophan (each capsule = 500mg). My health food store also carried a Source Naturals tryptophan where 3 tablets = 500mg, so each pill was approx 170mg. This allowed me to better control dosing as we built up. But I can't find that product on Source natural's website. Worst case, you can open the capsule and empty some out or buy empty gel caps and split the dose between 2 capsules. I would definitely check on her currents meds before starting tho. If you currently take an SSRI or MAOI, adding tryptophan could put too much serotonin into the system (you'd want to work with your doctor to taper down the meds as you upped the tryptophan if these meds were in the mix). FWIW - augmentin works better for my son than zith. We've also used Aleve because it lasts longer but Motrin seems to do a better job on regulating the mood issues than Advil does. They're two different types of NSAIDs. I hope the holiday time off helps her regain her footing. Hopefully no stressful family gatherings and just lots of couch time.

PowPow - I'm so very sorry. Tryptophan helps my DDs anxiety. If you don't think she'll take anything, perhaps foods high in tryptophan? Lots of peanut butter and turkey? Steady doses of motrin and hourly calls to the doc. Keeping you in my thoughts -

It helped my DS somewhat for a period of time. I found tryptophan to be more helpful.

He's never taken a cycline - only has a few adult teeth, so Doxy isn't an option. I know certain anx can cause hearing loss and/or tinnitus - vancomycin being one of them. But nothing on the list I found has crossed our doorsteps. He's taken augmentin, zith, omnicef, rifampin, bactrim and tindamax over the years but only zith/rifampin right now. He was on different abx each time he was screened. But thanks for bringing it up!

Trying to connect some dots here - but don't want to connect things that aren't connected. My son's school called today - DS10 failed his hearing screening In 1st grade, both ears failed only the 1000Hz tone. The pediatrician said to just watch it. (he was severe Pandas then) In 2nd grade, he passed his hearing screening all tones, both ears (recovering post-pex) In 3rd grade, both ears failed at 1000 Hz - couldn't hear at 20Db but could hear it at 25Db (had just started lyme treatment) In 4th grade, no screening In 5th grade (now), he failed his initial screening at 1000 hz but upon recheck, only the left ear failed, but left ear could hear this tone at 30Db He doesn't seem to be in any sort of flare but is getting over a cold and complained of a sinus headache yesterday. In addition, he's just been diagnosed with convergence insufficiency - a vision issue akin to dyslexia - and for that, we've started doing some exercises that work on proprioceptive and hand/eye coordination. In my brief googling, I came across the vestibular system and saw mention of a connection between sensorineural hearing loss and eye movements. I'm wondering if 1. these issues are connected and 2. if the exercises we're doing for vision therapy could help the vestibular issues and 3. if this is only a mild hearing loss that seems to come and go, is it even worth the expense (we are broke from vision therapy and lyme treatment) to see an audiologist and would he/she do anything? I can't run to yet another doctor and bleed more cash if it's for nothing. Thanks for any input

The Xmas Tree is in Rockefeller Center, not Times Square (http://www.rockefellercenter.com/tour-and-explore/the-tree-at-rockefeller-center/) 5th Ave & 50th St. Personally, I'd skip the Statue of Liberty unless there happen to be no lines. It really isn't worth waiting hours to climb stairs and look out a window. Ellis Island was far more interesting (tho not sure how interesting to young kids). They may prefer a NY Harbor Cruise or a NYC Lights Tour http://newyorktours.onboardtours.com/holiday-lights-tour/?gclid=COCuhYnE27MCFcXb4AodU3oATA Not sure how your kids feel about cities. Mine would quickly be overwhelmed by the noise and crowds. If they're not used to city pace, make sure you give them some time in Central Park just for the solitude aspect. Or the museums. I don't have good hotel ideas for you - for us, it's a day trip in and out. I'd check out a site like Hotels.com to get reviews. Neighborhoods in NYC can change in a matter of a few blocks.

What kind of pain? For joint pain, we've used glucosamine. For muscle pain, if she won't take motrin, maybe a topical analgesic like BenGay? Heating pad was a favorite for my DS, along with massages. I was also able to get insurance to cover some lymph massage therapy and the therapist taught me how to do it at home. Both kids love them and find them very relaxing. For nerve pain, perhaps a supplement that helps the myelin sheath or neuropathy? Not sure what that would be but perhaps others do.

I think these symptoms suggest some sort of neurological problem but I wouldn't say they're automatically Pans symptoms. There are infections (e.g. strep, lyme and co-infections) that can effect vision and other conditions that can lead to noise sensitivity/sensory overload. So I'd encourage you to keep looking for answers and infections. But keep in the back of your mind that there could be other causes. I only say this because early on (4 yrs ago), I was quick to blame everything on Pandas. After unraveling many things, some issues turned out to need interventions beyond antibiotics and autoimmune treatments. I know you want to know what we did to fix all this, but there's no easy or universal answer. One of my kids has been treated for Pandas, lyme, bartonella, pyroluria and convergence insufficiency (a vision dysfunction akin to dyslexia). One kid has found good health through treating methylation issues and convergence insufficiency. But others here have found much simpler - or different - paths. So I think the best advice is to look at the needs of your child and find the doctor(s) who are best able to help you dig. You will find answers. Hang in there!

Someone on another support forum posted this and I thought it might help some who struggle with pill swallowing http://research4kids.ucalgary.ca/pillswallowing/new-method

Smarty - I never underestimate the therapeutic value of a pina colada!! Should I ever again find myself at a PANS or OCD conference, I will happily indulge with anyone willing to talk about brain cells whilst sacrificing a few in the process Trg and Mom, thanks for the input. I have some regular lecithin that contains 170mg of phoshotidylcholine, so perhaps I'll just increase that for a trial before doing anything else. DS is good right now but will be having his first ever neuroeval (thru the school) starting the week after Thanksgiving. Being my neurotic self, I want to do all I can to keep him in this good place (and of course, he always seems to tank just before a standardized test). I should probably just chill and do deep breathing instead.

Thanks for the feedback. What dose/brand did you use?

I saw this article in yesterday's NYT - had the same thought. Then I saw Allen Steere's name and knew it was a set-up. 17 people? Using only blood samples? It was a foregone conclusion before they started the "research".

I've been giving DS lecithin because it contains phosphatidylcholine (helps memory and other neuro functions) and may help strengthen the BBB. Thinking about opting for the more expensive stuff that is pure phosphatidylcholine. Does anyone have any experiences to share? Dosage info for DS10 who is 85lbs?

I like Pina Coladas for this condition (for me, not DD) My DD had these issues - lots of tears and angry mornings. She either outgrew it or the methylation stuff helped (plus some CBT in the early days). Most issues are now resolved. Hair brushing is still a battle but that's her trying to be a tween not sensory. I've had to yield and let her brush her own hair - not to my liking, but it gets brushed and she gets out the door on time.

I too will have to dust off the library of bookmarks. I have the same recall as Nancy - some time back, we stumbled on something that made us go "yes, of course - maybe that's why it works for her son but made my DD nuts" But I can't remember what that AHA tidbit was. My DD tried it a year ago, long before we tackled methylation. So maybe it would work differently for her now, but we don't have any OCD or anxiety anymore, so no need to go there. The one thing to keep in mind is that NAC is sort of like a swiss army knife. It does more than one thing in the body. It's an important pre-cursor to glutathione but it also plays some role in the neurotransmitter realm. It's also a mucus-thinner and could play some role in a biofilm protocol. So one theory I had at the time of my DDs poor response was that if she had a chronic infection hiding in a biofilm (and she does have frequent sinus issues), then using NAC could erode the film and cause a herx. When I dug deeper, it was like pulling at a loose thread. NAC touches several processes that crossed my googling path that I ended up walking away from it because there were other things we could use that were "simpler" in their actions. I don't discourage anyone wanting to try it. I just toss out the possibility that if you don't like what you see, it may not be easy to figure out why it didn't work. Even tho I didn't like what I saw in DD, it only took a few days after we stopped to see her regain her balance. No long lasting effects, except to my bulging cabinet of "things that didn't work". (plus - it's all about balance - it's also possible we just used too much).

I think the two most important aspects of treating an MTHFR mutation is dosage and correct supplement. There is no single "right" answer about how to treat. Ideally, you partner with an experienced doctor to figure this out. But this is no easy task. From what I've heard, most of the Pandas doctors don't have experience and/or consider this to be a big deal. My own naturopath was also uninformed and even my LLMD, whom I respect greatly, has only modest experience and not specifically in terms of neuropsychiatric symptoms. There are a few DANs who are leaders in their field who seem to have a handle on this. So if you have the resources and are uncomfortable experimenting on your own, they'd be the ones to see (specifically thinking of O'Hara and Bock - or Yasko). If you find yourself having to figure this out on your own, here's what I've learned from my own experiences: 1. Start low and slow I can't stress this enough. Per Yasko's videos, I started my DD7 (one copy of the C677T mutation) on one drop of methylmate http://www.holisticheal.com/methylmate-b-nutritional-supplement.html (capsules also available but for kids, use the drops so you can tweak dosage with more precision). I dosed every day for a few weeks. As Yasko predicted, I saw an uptick in some mood issues after a week or so. Thought "oh good - it's a "herx-like" response. And maybe it was. Over 3 months, I build up to 3 drops/day. I was also using 500mg tryptophan to help DD with anxiety. Then evil child moved in. Skipping the gory details, I had tipped the scales and was overdosing the methylfolate. Too much can end up giving you the same rapid bipolar symptoms you can get from too little. (see http://www.mthfr.net for a case study description of a man who found he was ODing on the stuff and used 50mg niacinamide as an antidote). Eventually, DD ended up being her best at 1 drop of methylmate every OTHER day. Tho she only has one mutation, I've also found that she gets moody if she eats cereal fortified with regular folate or takes a multivitamin with regular folate in it - so I avoid these, even tho theoretically, she shouldn't be that sensitive to regular folate. Things are good, so I'm not gonna tempt fate. If you're homozygous, this might be even more of an issue. 2. There are several sources of methylfolate out there. There's a discussion on mthfr.net about the various forms. I took away the fact that you need to make sure you use L-methylfolate. I use Yasko's because it's the only one in a liquid form and since DD needs such a small amount, this works for us. Others require larger doses, so capsules from other retailers are probably just fine (e.g. I take 800mcg daily and feel good). 3. If you happen to be stuck figuring this out on your own, absolutely do not be adding or stopping any other meds or supplements for a month or two. My DD showed no major issues (except for the maybe herx thing early on) in the first month. It wasn't until month 3 that I realized I'd gone too far. This was all during allergy season, so it took me forever to figure out it was the methylation and not allergy. Try to keep things simple so you can tell if/when you need to back off. Doing this during cold/flu season will complicate things but it could also really help with the mood/rage aspect of a flair. So by all means, don't wait until summer. But do try to be as methodical as possible. 4. Keep niacinamide handy. It really helped calm rages when I went too far with dosing. (it may also help for those who are naturally overmethylators)(MTHFR people are generally undermethylators and should avoid excessive amts of niacin (vitamin B3) but everyone needs at least a little of the stuff so don't avoid it entirely). 5. L-methylfolate is for those with the C677T mutation. If you have two mutations (homozygous), you may need more than someone who's heterozygous. If you have A1298C mutations, TMG/DMG is the primary supplement to look at. Yasko talks about needing BH4, but that isn't available OTC. I'm sorry I don't have a lot of advice for A1298C - very little is written about it and I got lost in Yasko's discussion. I didn't force myself to delve into it. One caution- TMG is also called betaine. It is apparently NOT the same thing as Betaine HCL (which is widely available and marketed as a digestive aide). Something about the HCL changes the betaine. So if you're looking for TMG, don't get stuff with HCL in the name. 6. I know lots of people also use methylB12 in partnership with methylfolate. I don't. Partly because methylB12 is notoriously poorly absorbed orally -something like 1% survives the gut. So skip any combo methylfolate/methylcobalmin supplement you swallow. (or at least don't pay a premium for it). You can get a little better absorption by letting it dissolve under your tongue but not always practical for kids. If you really need methylB12, shots are apparently the way to go. I don't think there's anything wrong with taking it orally if it happens to be included in something else you're taking. I just wouldn't expect great results if you're taking it specifically for the methylB12 energy benefits. JMHO from my reading. I think for some kids, this is one of those things like probiotics - it's a good thing to address and can prevent bad things, especially as our kids mature and have to worry about miscarriage, heart disease, stroke, and eye problems. For some, it will be a good thing but they'll still deal with major mood issues from Pans. But for a sub-group, treating methylation can be a jackpot. For my DD, this was THE major issue. In the same way that yeast or gut issues will be the big enchilada for other kids. It wasn't an issue for my DS (pyroluria was his jackpot). But if you know you have an MTHFR issue, leaving it untreated is just leaving a land mine in the field and it could potentially remove a major obstacle - now and in adulthood. For those wanting to test for this, it's widely available from most commercial labs. retail cost is about $150. My insurance negotiated rate was $50 (my portion was 20% or $10 once I hit the enormous deductible). Here's Quest's test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=17911 (they have a different test # if you live in NY). edit - for those who asked about B6 - B6 has more to do with general "methylation" - especially the part of the cycle that converts homocysteine (a bad byproduct) into cysteine (good) and then into glutathione (essential). If you want to support the body's overall systems, I'd recommend P-5-P - the bioavaiable form of B6. My whole family takes P-5-P. But it has nothing to do specifically with any MTHFR gene mutation, at least not that I've come across. It's something I see as a good thing to add regardless of your MTHFR status (again, low and slow).

In addition to testing for chronic infection (mycoplasma, lyme et al), test for MTHFR mutations. Treating MTHFR imbalances turned my DD7 from evil, bipolar child to calm, happy child.

http://www.optometrists.org/findeyedoctordirectory/ This is the site I used to find our optometrist. However, there are some docs in my area that are not in this directory. So it's only one possible resource.

Some things that can help with viral infections are oregano, andrographis, l-lysine and zinc. Zinc and Vitamin C will help the immune system regardless of the strain of virus. The others are each effective against some viruses but not others. So results may depend on whether you hit upon the right match. I've personally had the best results with l-lysine. The other thing that helps is xylitol. It inhibits reproduction of viruses as well as bacteria. You can find it some gums and in some nasal sprays - X-Clear being the easiest to find.

My DS has been on this zith/rifampin combo for quite awhile with good results. We've discussed an augmentin possibility with the winter months upon us (zith does not seem to protect my DS from strep but amox or augmentin work really well for him). But we also have cyst busting and biofilm issues to address in the coming months and our LLMD wants to be judicious with the amox/augmentin. So for now, our approach is zith+rifampin and a supply of amox or augmentin on hand that I give for 7-10 days at first signs of a Pandas flare or illness. I think you may like this combo. It's worked for us.

Thanks for this. Both my kids have been diagnosed with convergence insufficiency and one of the recommended accommodations is to ask the teachers to print worksheets in 14pt type. This doesn't seem very practical and I wasn't going to even ask about it. But increasing the kearning, even by a little bit, might be doable. Does anyone know if certain font types are easier to read for those with reading problems - serif, sans serif, etc?

I don't have any direct experience with SSRIs. My kids have instead used tyrosine (a dopamine precursor) or tryptophan (a sertotonin precursor). But I'll toss this out just as an idea. I recently read a chapter in a book published by Johns Hopkins by a doctor who treats depression using tyrosine instead of the typical MAOI. His theory is this - you get the depression due to a shortage of dopamine (and to a lesser extent other neurotransmitters). MAOIs work by slowing down the reuptake mechanism of the receiving neurotransmitter. So the same thing as an SSRI except it's working on dopamine transmitters not serotonin transmitters. He argues that over time, the MAOI inhibitor stops working is because eventually, the amount of dopamine in your system breaks down and no matter how much you up the dose of an MAOI and slow down the reuptake inhibitor, if there's not enough grease between the ball bearings, you're going to have problems. He suggests that instead, you should leave the reuptake mechanism alone and focus on adding more grease into the system (dopamine in the case of depression, serotonin in the case on anxiety disorders). But..he also says you can't just add dopamine or serotonin. You need to add both into the system because the balance between the two is important. So in your case, he'd argue that focusing only on the serotonin piece may not be sufficient. If you feel there's benefit to the SSRI, one option would be to research tyrosine as a supplement to keep the two neurotransmitters in balance. Or perhaps look into using dopamine/serotonin precursor supplements in lieu of reuptake inhibitors. Dopamine plays a role in impulse control and for my son, too much of it or not enough of it leads to ADHD behavior. James Greenblatt, a professor at Tufts, has a private practice that uses supplements instead of inhibitors http://www.integrativepsychmd.com/ I don't have direct experience with him but I think one or two forum members have seen him. Perhaps they can give you some feedback. Just food for thought. Hopefully, the abx will also help!

As of this morning, only 74,000 customers are without power in CT. Here's the outage map that you can check for regular updates. Hover over Darien/Stamford and it tells you exactly how many customers in each town are without power. http://outage.cl-p.com/outage/outagemap.aspx

If there's persistent sinusitis, you may want to read up a little on MARCONS - which is an abx-resistant staph infection and often goes hand in hand with biofilms - thick mucus that cloaks colonies of bacteria. Here's one article I found in a quick search just to give you a little background http://goodbyelyme.com/free-articles/biofilm/marcons It's a common topic in lyme but other doctors may not be familiar with it. Here's another ling but fascinating article on biofilms in general http://bacteriality.com/2008/05/26/biofilm/ For films, you need to add a mucus thinning agent like nattokinase, NAC or perhaps even something like mucinex. You need to break down the protection that the mucus provides before abx can get at the bacteria hiding in it. If your immune system can't see the bacteria, your blood work measuring immune system activation could be normal (such as C3d) but the infection could still be there. As you say, the sinusitis could be allergies. But it could also be a chronic sinus infection that has been impervious to abx. So just something to consider.

You may want to post this on the lyme forum. I know many members there use the Byron White formulas and also have experience with babesia. My kids have used two of his formulas and I didn't see much, but others have seen major changes. So the Lyme forum is probably your best source of feedback. Air hunger is a big symptom of babesia as I understand it - have you tested for it?