LNN

Yeah, that kick in the gut really smarts for awhile. How much are you supposed to wrap your head around all at once? Looking back, doesn't Pandas feel so "easy" - one bacteria, kill it, dampen inflammation, be psycho-vigilant and get your kid to puberty. (Pandas moms - I'm being facetious - never thought Pandas was "easy"). Now you have bacteria permanently setting up shop and mold, that's ubiquitous in your home, her school, the woods in your back yard. Bubble wrap and the Sahara desert never seemed so attractive! As for being "too aggressive" - you have company. That's my big tendency too. Killing me to try to take the time to prepare the body for what may be ahead on our journey. tick tock. They're not staying little forever. Let's get this show on the road so they can have normal, healthy childhoods. But sometimes, other forces have answers that get unfolded in their own time. Getting the school involved stinks. I got so many strange looks. I now pick them up at the end of the day and shove pills in them as soon as they're buckled in just to avoid the nurse issue. And we eat dinner/abx a little later, and give bedtime pills at the end of reading time instead of when we brush teeth, just to gain a half hour further away from abx. It's a nutty way to live. But it sure beats the alternative of doing nothing. My advice - wallow for a few days. Good for the soul. Then drop DD at school one day and walk past the OT classrooms, remind yourself that others have their own struggles. Remember that the teachers who seem so normal are struggling with divorce, sick parents, an unemployed spouse, an abnormal mammogram...A rich life doesn't mean a carefree life. They're not the same thing. You will get her well. You will get yourself well. It will take time. Probably a long time. There may be more labels. More pills. And along the way, you will both grow from it and you will have an amazing young lady who has a wise, reluctantly patient mother who can both look back and be proud of the people they've become.

I will probably be a lone voice here, but I want to remind you that elevated CamK is not unique to Pandas. You need to look at the other anti-neuronals and clinical picture. You do paint a clinical picture of some sort of health-related behaviors. The fact the your younger son has always been difficult raises a flag in my mind that there may be an underlying issue deeper than strep, especially if anti-neuronals were in normal range. I don't think it's a bad thing to meet with the doctors who've helped your older son and do some testing or trial treatments for your younger son, in conjunction with some cognitive behavior tools for emotional control. It's a good place to start. I only caution you to not jump immediately to Pandas based on your older son's experiences. I always assumed that all of my kids' issues could be explained and treated with one diagnosis - Pandas. Turns out there are several things contributing to our picture and I think I did my kids a disservice by ignoring symptoms that didn't fit neatly into Pandas because I wanted so badly for there to be one answer, one solution. As you head down this path, which again, I think is reasonable, just be sure to always stop and do a reality check. Don't ignore things that don't fit, don't expand the Pandas definition to accommodate outlier lab results or behaviors or responses. For me, it turns out that all those little things that didn't follow the script ended up being important. I do hope you find collaborative, curious doctors and that your younger one finds relief quickly.

YIKES!!! I will PM you.

This is only my conjecture - I haven't done nearly enough reading to have anything figured out and every day I seem to go "Aha!...oh, wait.." So take this only as my understanding this moment in time.... Based on the people on the Yahoo Pyroluria forum, they don't seem to focus on mercury, tho some are familiar with Dr K and detox. So I'm guessing the two don't automatically go hand in hand, or else these people don't realize they have a mercury problem. I wouldn't automatically assume your DD has the issue but if it haunts you, you might want to read up a little on metals testing. I know little about it - have only gleened that hair testing is preferable to urine testing but couldn't tell you why. Like lyme and Pandas, its something where testing is considered indicitive but not reliable (oh gee - another area to mess with your kids' health in the dark without a flashlight). As for taking NAC - I don't know how strong a binder it is. NAC + cipro has been found to be a really good biofilm buster (the research was to study films on medical equipment, not in people). But I think any film busting protocol had better come with some sort of binding agent - either bentonite or charcoal - something known to bind the metals strongly. From what little I as an art major understand, chlorella and NAC are weak metals binders, molecularly not strong enough to hold on to mercury all the way through to excretion. Whether it's strong enough to get it to the gut, where clay could keep it, IDK. If you're not seeing any negative from NAC, maybe there's no metals problem. Or maybe the dose is so low it isn't doing much to move the mercury. Or maybe you think you're seeing things that are lyme but are actually metals symptoms...I don't know enough to begin to speculate. From what I understand about Cutler's chelation protocol - and that is very little - you're not supposed to chelate every day or every other day. At most, you do it every weekend and give the body time in between to rest. But when you do chelate, he's adamant (and that's putting it mildly) that you need to give the chelator every 4 hours (if DMSA or ALA) or 8 hours (if DMPS), even in the middle of the night, or you'll feel like crap. He feels Dr K's notion that the body will drop mercury when you add zinc is laughable. He feels it's the chlorella that's acting as a poor chelator, not the added zinc. He's all for supplementing with zinc, but thinks that isn't going to make the body drop any mercury it has. He hates - did I say hates - chlorella. Thinks it does more harm. The man seems very knowledgeable in his area of expertise. But that doesn't mean he's got it right. For all I know, he could be speaking absolute jibberish but saying it with such authority that he sounds convincing. We stopped chlorella and NAC to be on the safe side. We stopped ALA for now - it's apparently a really good chelator but crosses the BBB and will carry mercury to whichever side of the BBB where there's less (seeking equilibrium). So Cutler says to not use ALA until you've chelated the rest of the body for awhile (with DMSA or DMPS) so you're "sure" that when ALA moves the mercury, the body side has less than the brain and the ALA will chelate across the BBB into the body side, where it can be excreted. I've begrudgingly ordered his book (he's not a pleasant man and I hated giving him royalties). But I need more info and his seems the best way to get a good understanding. You can read the first 40 pages of his book here http://books.google.com/books?id=ZG9glNfif5YC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false and a little on amazon http://www.amazon.com/Amalgam-Illness-Diagnosis-Treatment-Better/dp/0967616808/ref=sr_1_1?ie=UTF8&qid=1317979540&sr=8-1#reader_0967616808 I'm not posting to scare anyone. I don't want to yell "fire" in a crowded movie theatre. I don't want to scare anyone away from anything that they feel is helping their kids. If what you're doing seems to be helping, stick with it. If anything you read on a forum worries you, by all means, check with your doctor. I don't have the science or medical background to suggest anything and heaven knows I once talked about Pandas with such authority and found out I was far from the mark with my own kids. So PLEASE take what I post as food for thought, but not medical advice or "absolute truth" for everyone. It's just that I came across this stuff and it was opposite what we were all reading in Dr K's KPU paper and I felt I should put it out there for others to look into themselves. As for CORE, someone on the pyroluria site suggested that when you have trouble increasing your dose, you can start by adding the extra dose every 3rd day, then every 2nd day, until you build up to every day. I thought that was a good idea. Also, consider not giving all the CORE at the same time. Some in the morning, some at night, for better distribution/availabilty throughout the day.

Ok, upon further reading, NAC, like chlorella, has 1 thiol (part of it's molecular makeup)- meaning it is a mercury magnet but doesn't have the 2 thiols required to make it a strong chelator. 2 thiols make a pincer grasp onto the mercury. 1 thiol may move mercury but not necessarily bind to it long enough for excretion. So if mercury is a concern, it wouldn't be a good option. I guess we're heading for a hair test on DD before we go down this path. BUT - if someone has mucus issues and not much issue with metals, NAC may still be a good option.

Does this describe the pain? (from Wiki - take it with a grain of salt, but if the word itself is an accurate description, it mught give you something to research... Dysesthesia (dysaesthesia) comes from the Greek word "dys", meaning "not-normal" and "aesthesis", which means "sensation" (abnormal sensation).[1] It is defined as an unpleasant, abnormal sense of touch, and it may be, or not be, considered as a kind of pain.[2] It is caused by lesions of the nervous system, peripheral or central, and it involves sensations, whether spontaneous or evoked, such as burning, wetness, itching, electric shock, and pins and needles. It is sometimes described as feeling like acid under the skin. Burning dysesthesia might accurately reflect an acidotic state in the synapses and perineural space. Some ion channels will open to a low pH, the acid sensing ion channel has been shown to open at body temperature, in a model of nerve injury pain. Dysesthetic burning may be hallucinatory as to the cutaneous surface, but accurate as to what is occurring in the synapses.[citation needed] Causes Dysesthesia is commonly seen in diabetic patients, and can be relieved by using creams containing capsaicin. Dysesthesia is among symptoms of neuropathy (along with paresthesias, gait disturbance, weakness, and absent DTRS). Dysesthesia, along with polyneuropathy can be a symptom of nerve damage caused by Lyme Disease Dysesthesia is a common symptom of a withdrawal from alcohol or other drugs. Dysesthesia is also a common symptom of Multiple Sclerosis, or MS. It is an effect of spinal cord injury.[3]

To your question about if anyone had their kids come back negative on both - my answer is no. My son had elevated C4a, my daughter had elevated C3a. Both have elevated C3d - which confirms, in my mind, that their issues are infection driven. I think the fact the your son came back so low on both is important. You may look back later, once you've discovered more, and see that is was a clue. So I wouldn't forget it. But I also wouldn't use it as a confirmation that your son doesn't have a lyme or mold issue. If there were one test that could rule lyme in or out, we wouldn't have all the controversy. I don't recall your son's Igenex results. If they were only mildly suggestive, this seems to indicate you may need to keep looking for clues and maybe other or additional culprits for his OCD. If they were highly suggestive, I'd put less stock in the C3a/C4a results. I think you need to put every test in context with the results of the others, as well as response or non-response to particular treatments. Your son's reactions to treatments are far more telling than the experiences of anyone else's kids or the results of any single test.

I recently joined a pyroluria forum and someone posted about NAC as a biofilm buster. I did a little digging and found this: http://www.wellnessresources.com/studies/entry/n-acetyl_cysteine_reduces_biofilm_formation http://www.biofilmcommunity.org/f5/helicobacter-pylori-biofilm-nac-pretreatment-clinical-trial-results-71/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC169071/ Anecdotally, I had started DD on NAC about a month ago for her OCD. She deteriorated. I was worried about NAC feeding yeast (something else I had come across) and even tho I didn't see silliness or hear complaints about itching, I tapered off it. Now I'm wondering... We have always focused on her gut - she suffers from GERD and eating issues. Anyone else have any experience with NAC?

The others have given you good food for thought on whether to keep your Dr B appt. And I'm sorry but I don't know anything about the Yasko protocol. But what you describe is not a neat, simple situation. I would be surprised if there were one, neat, simple diagnosis. I subscribe more and more to the "overflowing bucket" philosophy, where a few things early on can fill the body's bucket and from then on, every illness, environmental insult, or what-have-you then causes the bucket to overflow. It's more than the system can handle. So you need to start peeling things away, one by one, to relieve the load. There's so much you can't convey in a post and I'm sure there are small and big things you've left out. It could very well be that Pandas is a big or at least a part of your picture and I would certainly encourage you to explore that aspect. As TPotter mentioned, tick-borne illnesses and other things can also contribute a similar list of symptoms. I only want to say that a few symptoms you mention - joint pain, severe headaches, intermittent fevers, unexplained rash, bright red cheeks - these are not commonly big Pandas symptoms. They are more common in lyme and probably several other illnesses. The light/noise SPD issues can be common to both babesia and heavy metals issues. The crashing when not on prednisone is telling - just don't know what it's telling of. 4 months would be an incredibly long time for a Pandas kid to be on prednisone. It suggests either a dependency (maybe due to length of treatment?) or severe inflammation, like a lupus sort of thing (and I know nothing about lupus - so not suggesting that's at play). What's also notable is that you don't mention the two "biggies" of Pandas - OCD and/or tics. Not that I wish these on your son, but mild generally isn't how Pandas parents describe their kids' OCD. To me, it just doesn't fit neatly into one single, unifying label. I'm no doctor and I'm not trying to second guess anyone you've seen. I'm not saying there isn't a Pandas component to what you're dealing with and I don't want to discourage you from seeking treatment in the best way you see fit. Absolutely follow your instincts here. I just suggest you don't forget about the "outlier" symptoms. They have always come back to kick my butt when I thought we had finally found "the" answer. So now I pay attention to all of them and when something doesn't fit, I realize I may be working on more than one puzzle. I do hope your son responds well to treatment and that relief comes to you and your family quickly.

I'm hoping Mom2Alex will chime in on her personal experiences, but I'd check out the symptoms of mercury poisoning in addition to lyme. Now, granted, this is because metals are my new area of research and I'm in that phase where you suddenly see it everywhere. So take it with a grain of salt. But what I hear is that you're not seeing yourself in the description of lyme that you've come across thus far. My son also had muscle pain more than joint pain. He also has the constant brain fog that sounds very much like you describe it. He has lyme, possibly bartonella and probably mercury toxicity. I'm not in your area but other members are. Hopefully they can advise on doctors. This site isn't limited to kids. Most of us have kids who battle a number of immune issues and some of the parents have found themselves dealing with lyme as well. But most of the conversations are about our kids because we're the ones who are advocating for their treatments. Doesn't mean you can't ask adult questions. We just have a kid slant a lot.

Thanks S, as always... So just thinking out loud... DS was on monotherapy abx for 18 months (5/09 - 9/10), then on combo abx for the past 12 months. I think we've done all we can on "free floating" spirochetes. We did cyst busting for 4 weekends in April '11 and had to stop. He couldn't detox fast enough and I'm thinking it was more than just toxins, that it was also mercury/lead (based on urine test and his "blip" behavior the day after DMSA challenge for the urine test). So I hesitate to do a cyst-busting plan that doesn't incorporate a true chelator. I believe the cysts as well as the films are holding mercury. As you well know, the use of clay/charcoal is difficult when you have to work around abx, probiotics and school. So a binder alone, maybe only once a day - don't feel that will be sufficient and am very worried about mercury being released without 2 thiols floating around to catch it... I think mercury needs to get to the gut before it will be bound by a binder. Too risky that it would settle into tissue, so I really want a chelator on board (does this make sense or am I being paranoid?) That brings me to the idea of using Cutler's chelation plan, every other weekend, with clay or charcoal once (maybe twice but I can't see how) a day every day to sop up bio-toxins from the spirochete die off. Will also remain on combo abx to kill the spirochetes as they emerge from the film. Will also supplement with mega-zinc, increase probiotics to ward off yeast (why does yeast become a problem with chelation?), maybe add taurine and magnesium (like magnesium for it's BM moving abilities and sleep benefits and its possible ability to help enuresis, but have also read that lyme likes the stuff and you shouldn't supplement - on the fence about that one) I can understand holding off on chelation until the load is reduced (which I hope is what we've done in the past year). But I can't see waiting until lyme is "done" because in DS, I think a lot of his lyme is in the biofilm (3 yrs on abx - you know those suckers have secret bunkers). So aside from my gnawing desire to ACT, it feels like this is the next logical step. But I'm not married to it. That's why I'm asking for help. I want to see where the holes are in my thought process. For me, it feels like film busting or cyst busting has to come with a chelator due to what I think is a mercury situation. But yes, it does feel like I'm trying to combine what is usually a two step process into one. On the other hand, I'm not grasping a way to safely do one without the other if I'm right about our dual problem of mercury+lyme. One isn't going to be dormant while we deal with the other. Am I being too aggressive? I want to cure the kid, not kill him (bear in mind - our biggest issue is brain fog/cognition. Tics, OCD, rage - only came back when we did cyst busting. Muscle pain is gone. Brain fog is a daily thing. Which makes me really nervous about moving mercury without excreting it - I fear there's plenty in the brain - the stakes are high)

I don't have any papers, per se. But I did a quick google on herx and this was one of the first hits I got. It's from a Rheumatioid Arthritis site, thus the RA focus. But the idea is the same. If your child comes from Pandas, a herx is going to result in an increase of at least some of the things you think of as "Pandas". Education / Brochure Sheets / Jarisch-Herxheimer Reaction The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms. A TRANSIENT SHORT-TERM, IMMUNOLOGICAL REACTION What does this mean in layman's terms? The Herxheimer flare reaction may be the first indication that the antibiotic is reaching its target and is therefore considered a good sign. In his original book, The Road Back, the late Thomas McPherson Brown, MD noted that the reaction caused a temporary worsening of symptoms. The amount of medication may be directly related to the intensity of the flare. Medications which have no effect on mycoplasma (or other microbes) do not provoke this reaction nor do these medications generally have a favorable long-term effect on the disease. Unlike the RA flare, which can last for weeks or even months, the Herxheimer flare reaction is often of short duration. (Scleroderma patients who do not exhibit inflammatory components to their disease generally do not report a Herxheimer of clinical significance.) Large doses of antibiotics may initially caused a worsening or flare reaction in many of the rheumatic diseases. The rheumatic diseases which are most hypersensitive (rheumatoid arthritis, lupus, psoriatic arthritis, etc.) have shown similar, distinct and often severe flare reactions from even a low dose of antibiotic. According to Dr. Brown, when the resulting released toxins go to the joints, joint pain is the result; when they go to the brain, depression may result. Dr. Brown found the Herxheimer effect showed a number of important principles at work. It demonstrated that the disease was a hypersensitive reaction, not to the drug itself, but to the toxins that a microbe creates in response to the drug's presence. And, it opened the way to a chemical attack (with medications) on the whole area of arthritis and rheumatic diseases. Therefore, the focus moves toward mopping up the toxins to relieve the misery, commonly referred to as "detox".

Oh, I have the questions! It's the answers I need No, no conferences for me this year. But by all means, feel free to print out my questions and corner some poor, unsuspecting presenter for me (us)!!!

So I've been down the mercury/chelation path recently. I have several things that make me feel mercury toxicity is part of our problem. DS also has KPU. I also believe after 3+ yrs and mutliple abx for Pandas & lyme, biofilms are a big problem. After extensive reading, I want to try a slow chelation treatment every other weekend, using DMSA or DMPS. (after checking for glutathione levels and yeast and doubling up probiotics, probably adding taurine) - oh - and after my father's visit in early November! Here's my dilemma: 1. Biofilms use mercury and lead as two of the building blocks. 2. If you chelate mercury and lead on a weekend, the chelator will bind to the metals hopefully until excretion. You will probably feel poorly during the weekend and on the day you stop, because some metals may be loosened but not bound up and will re-settle somewhere. 3. If you remove biofilm building blocks, you will erode the biofilm and release spirochetes and other nasty microbes. 4. These microbes will release toxins as they die (the herx). 5. You will feel poorly until the die off ends and the toxins are excreted 6. Chlorella is apparently not a good thing to use because it molecularly can attract mercury but can't form a pincer grasp to bind it strongly enough to ensure its excretion. It may only move the mercury, not get rid of it. Clay may be an option, or charcoal, but both come with timing issues when you have so many abx and probiotics and supplements to fit in. The biofilm busting protocols I've come across don't use DMSA or DMPS. They rely on breaking down the biofilm in other ways. But that doesn't address how to handle the mercury/lead fallout. The mercury chelating protocols I've come across don't address how to manage a die-off herx for the days/weeks afterward. So I'm stuck winging it. So here are my questions, for anyone who's followed any of this... - Does anyone know a good resource for bentonite clay capsules (DS will never drink it) - Does anyone know of an alternative to chlorella that doesn't need to be timed away from other things? Have come across zeolite but that seems to absorb good stuff the same way clay or charcoal do. It needs to be practical for a 9yo who is particular about what he'll put in his body. Pills = great solution. Liquids = bad solution - Most importantly - does anyone know who might be an expert on both biofilms and mercury detox? A researcher or clinician I could ask my LLMD to consult with? At our next appt, I'm going to try to bring our LLMD along for this ride but I think it would help if I gave him a name and phone number of someone who could talk shop and walk through this to see what I'm not covering. He already follows some of Dr Ks ideas on this, but the chlorella has made me go hmm...so with due respect to the man who changed my son's life by talking about KPU, I want someone other than Dr K to look at this picture. Sapi is an expert on biofilms, but probably not chelation. Who's a big name in the autism/lyme world other than K?

My head is spinning from too much reading this weekend! Take EVERYTHING I post in the coming weeks (if not always) with a grain of salt as I sort this out in my art--major mind (I barely passed chemistry - preferring to study a boy I had my eye on instead of the periodic table). DS is taking CORE right now, which is Dr K's blend of supplements, and includes manganese. So I can't say what part manganese plays in his improvement vs. zinc or B6. So I'll just give you my still-evolving theory on lyme and deficiencies...and see what others have to say. If lyme needs things like manganese to thrive, and mercury and/or zinc or other things to make strong biofilms, then I can see how one could argue that you'd be feeding the beast by supplementing. On the other hand, the bacteria strikes me as the bully in the building, and it's going to get fed first. So if you tried to "starve" it of nutrients, the body itself could starve first, with lyme taking whatever was available. So the other side of the argument is to mega-supplement, satisfying the lyme, yes, but also leaving enough for the body to function, which in turn might make it stronger to fight the infection. Perhaps lyme is starving the body as a self-defense strategy, making it's enemy, the body, weaker. IDK. But like you, supplementing has produced some great results. Unfortunately, when we upped CORE to 3 pills last weekend, he ran a fever (a good sign I thought) but then hasn't recovered physically or cognitively. I backed down to 2 CORE on Wed. But no improvement. He's also quite cranky. So something else seems at play. Metals has crossed my radar and I'm trying to really think it all the way through before acting (even tho my gut is to want to act NOW). I've been involved in lots of conversations on forums about chlorella and mercury. That chlorella may be a good mercury magnet but lacks the chemical structure to make it a strong binding agent. That it could move mercury around without eliminating it. It gives me pause. Magnesium on that supplement list I posted on Pandas forum also struck a chord for my son's symptoms. So it's possible we have a mercury problem (provoked urine showed elevated mercury but I also read that the test can be meaningless). It's possible we have a nutritional deficiency. Most reading I've done says to get the body and gut in shape before chelation anyway. So I think I will spend a month or two doing that and asking LLMD for some pre-chelation blood work (like yeast, glutathione levels, any detox-pathway tests that anyone knows of that might show potential detox problems?) Then we'll see how DS feels. If he still hits that 2month wall he always seems to hit, then we'll probably move forward with an every-other weekend chelation trial. Much to think about and digest and I sure do wish I'd been blessed with a better scientific mind.

None of this is medical advice. This file is meant to be a time efficient way of doing what the list does—sharing information among people. It is suggested that you read the file in its entirety, particularly if you are new to this. Although there is plenty of information, it is just a starting point. Supplementing your child appropriately will require that you consult other, more detailed resources, a few of which are listed below, in order to get the information you will need. If you find mistakes or would like to add something, please email Anita at mysuperteach@hotmail.com. General information If you want a great starting point for just about anything you need to know about autism you should go to http://www.danasview.net/index.htm. Dana has compiled a mind-boggling amount of information that will save you days of searching. If you want supplement specific information, go to http://www.danasview.net/parent3.htm#supps Another site for detailed supplement information that is not ASD specific is http://www.Vitaminherbuniversity.com. Some of the general information provided here has been taken from this site. The site offers interesting articles and helpful ideas such as how to read a vitamin label, what toxicity looks like, and health implications for each supplement. Autism: Effective Biomedical Treatments (2005) by Jon Pangborn and Sidney Baker has up-dated information, particularly for parents just starting out, and one entire section on supplements. Pangborn outlines a general protocol for introducing supplements. He admits that certainly not everyone would benefit from it, but he does explain in a lot of detail the background science and experience informing these recommendations. A lot of information from this file was taken from this resource. You can order this book direct from ARI (see below). You will notice the comment “good ARI rating” in some of what follows. To find out more about what has worked for other parents, visit http://www.autismwebsite.com/ari/treatment/form34q.htm at the Autism Research Institute website. Some information in this file was also gleaned from DANWebCast presentations. Go to http://www.danwebcast.com/ for presentations on autism, particularly biomedical options. Go to http://www.noamalgam.com/ if you need information on chelation and Andrew Cutler’s protocol, where you will see his books available for purchase. If you would like to find a bit of that same information, including Andy’s recommended dosing schedule (and a whole host of other informative and inspiring things) go to http://home.earthlink.net/~moriam/ (and send an email to thank Moria for all of her hard work). Two books which discuss supplementation which Andy has recommended as good are Michael Murray's Encyclopedia of Nutritional Supplements and The Power of Herbs. One knowledgeable parent describes them as “very well-organized, well-written, in depth (but not so much depth it's impossible to follow).” A good resource for people looking for more in-depth, technical information on certain classes of supplement is http://www.carbonbased.com/modules/sections/index.php?op=listarticles&secid=2. A quick introduction to supplements common use for biomedical approaches to autism can be found at the Kirkman’s site http://www.kirkmanlabs.com/roadmap_medium2.html (be sure to roll over the supplements to get the information). If you are looking for supplementation advice specific to viruses, please see the Viral Information and Resources file in the files section A good number of parents are using the Yasko protocol for their autistic children or simply using some of the supplements recommended by Amy Yasko. You can find out more information here http://www.ch3nutrigenomics.com/phpBB2/welcome.html Her supplement recommendations are for the most part quite different from the DAN! approach (this file reflects more of a DAN approach). Knowing which are the fat soluble vitamins and which are the water soluble vitamins can help you organize your dosing schedule. The fat soluble vitamins are A, D, E, and K. The water soluble vitamins are B1 (thiamine), B2 (riboflavin), B3 (niacin), B5 (pantothenic acid), B6 (pyridoxine), B7 (biotin), B9 (folic acid), B12 (cobalamin), and C (ascorbic acid). Advice from parents: 1. Always start ONE supplement at a time. Start at a very low dose, increasing gradually. If you add more than one at a time, it's much harder to tease out what's causing the improvements or problems. If you see nothing, or some improvements, continue upping the dose, within safe limits, of course. If you see regression or intolerance cut back or stop. If you are just starting this process, you will likely want to give your child every supplement out there in hopes of helping. Don’t. It won’t help. You don’t want your child to regress, you don’t want your child to take supplements that are unnecessary, and lastly, supplements can add up financially. 2. Just because something works for others does NOT mean it will work for you. For example, calcium is considered an important initial supplement, yet some children are already too high in calcium. Some kids cannot tolerate certain supplements at certain times. What they cannot tolerate at one point, may be necessary at some other point. Conversely, what they need and progress with at one time may not be tolerated later. If your child regresses after doing well and you can't figure out why, it may be that a supplement is no longer needed or tolerated. Try dropping the ones you suspect, or even all of them, for a few days and adding them back one at a time, watching for any signs positive or negative (there is some concern that dropping all the supplements at once can cause its own problems, and you may only want to try this if the situation really warrants it). 3. Buy the brand with the least fillers and additives. Powders are generally better than liquids because they don't require preservatives or flavorings, which cause trouble for many kids. Some brands which contain few if any fillers are Allergy Research Group, Metabolic Maintenance, Pure Encapsulations and the NOW brand powders, with the last brand generally being the least expensive. 4. Source Naturals, Natural Factors, Nordic Naturals, and Jarrow, as well as the brands mentioned above, are recommended by many parents. Many people purchase supplements, particularly ones specialized for ASD children from Kirkman’s, Klaire Labs, and Brainchild Nutritionals as well, and from all reports, these last three companies are very helpful on the phone. Many people choose to order from http://www.vitacost.com/index.html and http://www.iherb.com/store/. If you are a Canadian, you may want to consider http://spectrumsupplements.com or http://feelgoodnatural.com as an easy way of procuring some American-based supplements. 5. If your child is phenol-intolerant, B vitamins are likely to be a problem, especially B2 and B6. 6. Some people buy a multivitamin mix only to find that their child does not do well on it, either because the vitamins and minerals ratios are not good (too little of one thing, too much of another) or because in such a large mixture something won't be tolerated. Consider getting trial sizes beforehand or mix your own so that the ratios/ingredients are always adaptable. Having said that, many people use a multivitamin/mineral powder or liquid (Life Extension, Brainchild Nutritionals, Kirkman, and New Beginnings are some recommended sources) as a starting base and then add whatever extra is necessary to make things more convenient. 7. If your child is soy-intolerant, make sure any oil based supplements are in something other than soy oil – vitamin E is usually in soy. Source Naturals Gamma E is sesame oil based. Also be aware that most fish oils with added vitamin E will have soy in them. 8. If your child is corn-intolerant, make sure your vitamin C isn't derived from corn. Twinlabs Allergy C is made from palm and Perque makes Vitamin C from potato, for example. 9. Sometimes a child doesn’t tolerate a supplement because of the carrier. For example, if magnesium seems to be a problem, it may be just the magnesium citrate that isn’t tolerated, but magnesium glycinate might work. 10. Getting a daily or weekly pillminder makes supplementing much easier. Keeping good records (supplements given, general comments on behavior etc.) can really help you spot problems and successes. To save time, consider making a chart that you print out each week. You will need to adapt the chart as your child requires different supplements over time. 11. Try to give the water soluble vitamins like B1, B2, B6, B12, biotin, niacin, panthothenic acid and folic acid and the minerals like magnesium, zinc, selenium, molybdenum three or four times a day (divided up into appropriate doses, of course). The fat soluble vitamins like A, D, E, and K can be given once a day. Calcium can block the absorption of other minerals (like zinc) and some people choose to give them separately. 12. ASD children commonly require 2 to 3 times RDA of a supplement. In some cases, need can be much higher. If uncertain of where to start, begin dosage at ¼ the RDA and work up. Ideally you want to give the minimum amount of supplement for the maximum benefit. Be sure to educate yourself regarding possible toxicity levels. 13. Many parents who have children who cannot swallow pills hide supplements in things like smoothies, jam, ketchup, nutbutter balls, favorite drinks, peanut butter or pudding. Consider the flavor of the supplement (for example, selenium has virtually no flavor, milk thistle tastes a bit like dirt, vitamin C powder can be quite bitter) when you are choosing a hiding place. If you need some more ideas on how to get your children to take their supplements, you might try here: http://www.kirkmanlabs.com/about/buttons/taking_supplements.html 14. If you’d like to teach your child to swallow pills, this may prove to be a helpful resource: http://www.dbpeds.org/media/2004AutumnSODBPNews.pdf 15. If you have spilled your supplements and cannot tell which capsules are which, see post # 156734 at autism-mercury for excellent advice on how to solve your problem. 16. If you are unsure of your child’s nutritional status (as most of us are with ASD children) you may want to run tests like the Metametrix Labs ION panel http://www.metametrix.com/TestServ/default.asp?PageID=1&TabID=1 which you can interpret yourself by using the information found here http://www.iwdl.net/Practitioners/Organix%20Pract%20Interpretation.pdf http://www.iwdl.net/Practitioners/Amino%20acid%2040%20interpretive%20guide.pdf http://www.iwdl.net/Practitioners/Fatty%20Acids%20Screen%20Interpretion.pdf Supplement Information (in alphabetical order). Please note that supplements that are generally considered as those which should be in place first are marked with an asterisk (*). Consult Pangborn’s chapter on supplements for this view on supplementing priorities. 5-HTP can help promote the production of serotonin, often low in children with autism. It may help with sleep problems. Activated charcoal is used to absorb toxins released by die-off (Herxheimer reaction). Do not use at the same time as other supplements, as it will absorb those as well—you should wait 2 hours. Adrenal Cortex Glandular is a supplement that can help support stressed adrenals, a problem quite common in autistic children. Adrenal stress can be debilitating and will likely only worsen over time if not addressed. Some signs of poor adrenal function are “anxiety with OCD, poor task switching, sensory integration problems” (per Andy Cutler), and avoidance of other activities by engaging in things such as repetitive movie watching. One trusted brand is Nutricology Organic Adrenal Cortex Glandular. Aloe vera liquid is sometimes used to help deal with constipation and aid in gut healing. George’s brand is tasteless and highly recommended. Alpha Lipoic Acid (or Lipoic Acid) is a chelator and should not be taken as just a supplement by anyone with amalgams or a metal toxicity problem. Be sure it is not a part of any multivitamin your child takes. Amino Acids are relatively complex in that there are a wide variety of possible deficiencies among autistics; therefore, some people get a custom blend based on tests (eg. ION test from Metametrix Labs). Some people simply use a broad spectrum amino acid support although there is some concern among people that glutamate is not good for some of our children. Most autistic children will have an amino acid deficiency and this deficiency will have far-reaching repercussions on health and therefore behaviour. Antifungals are used to fight yeast overgrowth, a common condition in ASD, especially among children who have used antibiotics. Antifungals can be over the counter (OTC) such as garlic, caprylic acid, oregano, grapefruit seed extract (GSE), and oil of oregano. Or they can be prescription, such as Nystatin or Diflucan. If you use a prescription, be sure to consider whether your child tolerates artificial flavor or color—if not, a compounding pharmacy can help you avoid those. Always use probiotics in conjunction with an antifungal otherwise you risk the overgrowth of bad bacteria, a problem equally serious. Biotin is one of the B vitamins. No toxic effects of oral biotin have been reported in humans or animals, even at doses up to 10 mg/day. Used as a yeast fighter in that it seems to prevent candida from transforming into a more difficult to fight form. *Calcium supplementation can become very important if your child is casein-free. Best taken with meals. Some difference of opinion as to which is the best form. Some people find baking with the powder form an easy way to supplement. Can be constipating. Should be taken away from other minerals like zinc. Good ARI rating; however, some children definitely have problems with calcium. Information can be found on the Vitamin K yahoo group. Carnitine, taken in the form of l-carnitine, has shown promise for autistic children who tend to be low in this particular amino acid. It can help with energy by acting on the mitochondria and can help children with muscle tone problems. Carnosine has helped some ASD children with seizures, but has had adverse effects on ASD children who do not suffer from seizures. Adverse effects will take a few days to subside after stopping the supplement. Caprylic Acid is used as a yeast fighter. Caprylic acid is a fatty acid. It can be taken as tablets (often coated) or as an oil (generally tasteless). It can only deal with yeast it comes in contact with and should probably be taken a few times a day. Choline is now considered an essential nutrient, classifying it as a vitamin. There are no known toxic effects from choline, though high doses may worsen epileptic conditions. Some people use choline alfoscerate starting three to four months after chelation to target the hippocampus (part of the brain thought to be most affected by mercury) and its connectors. Choline bitatrate does not survive the environment of the stomach, phosphatidylcholine, or lecithin does (see phosphatidylcholine). *Cod Liver Oil is often used for ASD children because of the vitamin A, vitamin D, and omega three fatty acids it provides. See Vitamin A and Essential Fatty Acids. Colostrum is used to bolster immune system. Be sure to verify with the manufacturer if it is casein-free if this is an issue for your child. Kirkman’s does guarantee their colostrum to be casein-free. Also, be sure to buy organic. CoQ-10 may help some ASD children as it is implicated in many body functions. Works best if given with EFA and Vitamins C and/or E. Implicated in mitochondrial function. ry to give with food, and is best given in the morning, as it has implications for the manufacture of melatonin. Be sure to close bottle and keep out of sunlight. Culturelle is a single strain probiotic. Works well against clostridia. Made by Vitamin Research Products. Some children very sensitive to casein may have problems with this product. *Digestive enzymes have been used successfully by some parents to help improve their ASD child’s health. (Good ARI rating) Many consider enzymes one of the best supplements to try first in order to improve digestion. Some parents use enzymes with a special diet, others replace the special diet. Enzymes are the exception to the rule of stopping supplementation if there is regression. Some “worse” behavior is not uncommon before it gets better. Houston’s and Kirkman’s both carry enzymes formulated for ASD children—each company has a different view of enzyme use. Some parents have been able to remove their children from a special diet using Houston enzymes, many of which are listed in this file. DMG, or dimethylglycine can improve language, eye contact and stamina. May cause hyperactivity. Try with folic acid to reduce hyperactivity. If hyperactivity is still observed, try TMG, which is DMG with one more methyl donor. Dosing in the morning is recommended. See the ARI website for more information. See also TMG. Epsom salts are often used for ASD children. Magnesium sulphate, the chemical name for Epsom salts, offers both magnesium and sulphur. Often taken in the form of a bath or as a skin cream. Many parents find that Epsom salt baths or cream can help deal with phenol problems and alleviate problems sometimes associated with swimming in chlorine pools. It can also calm some children and help them to sleep better. See http://www.enzymestuff.com/epsomsalts.htm for detailed information on this topic. *Essential Fatty Acids, most particularly the Omega 3’s, are commonly at low levels in ASD children. Although it is thought that most Americans have a 10 to 1 ratio of Omega 6’s to Omega 3’s in their diet, when the recommended ratio is 2 to 1, some of our children who have not had a typical American diet may need Omega 6 supplementation with something like evening primrose oil or black currant oil before they will tolerate the Omega 3’s. Pangborn recommends having taurine, Vitamins C and E in place before starting. Give with food for better absorption and to reduce possibility of any nausea. Some children seem to do better with high DHA levels, some better with high EPA levels. EPA can convert to DHA, but the reverse is not true. This is an important consideration, particularly for older children who may not need as much DHA as very young children. Also it is important to understand that if a child seems to do better on the high EPA, that child will still be able to create as much DHA as needed . Also, best earlier in the day because the oil might be energizing. General information on EFAs can be found here: http://www.equazen.com Can help with dyspraxia, skin problems (bumps on skin, dry skin, “jock itch”). Fish oils should not smell fishy. Carlson’s is a recommended brand of fish oil that is vitamin A and D free. Nordic Naturals carries a CLO (containing vitamin A and D) that is very highly recommended. See Vitamin A. Good ARI rating. See also flax seed oil. Flax seed that is ground is a source of fatty acids (although see comments under flax seed oil) and is of great benefit for fibre. More than 4 tablespoons a day is excessive and can cause problems. See also constipation file. Flax Seed Oil is a source of essential fatty acids; however, some people are unable to convert the omega 3’s in flax to the long chain form. Also, flax is not a good source of EPA. For these reasons, some people believe that it may be more beneficial to children with digestion problems to use the fish oil fatty acids. Folic acid or folate is one of the B vitamins. Give away from zinc. If a child cannot tolerate folic acid (becomes hyper or aggressive) try folinic acid. Folic acid at high doses of 5 to 30 mg may cause an increase in frequency of seizures in epileptics. GABA can be helpful for language, anxiety, and perhaps seizures. Garlic Oil is used as an antifungal. Note that garlic is high in sulfur and some will not tolerate it. Cooked garlic will not have the same anti-fungal effect. Glutathione or reduced, active glutathione (GSH) is somewhat controversial. Many ASD children are low in glutathione—a normal occurence when the body is sick. Some believe supplementation is warranted only if plasma cysteine testing is low. Others believe there are benefits for a wider range of individuals. Three main forms of glutathione seem to have some positive effect on some children: lipoceutical, transdermal, or nebulized. If using the lipoceutical glutathione it is best not to shake it. There have been some adverse reactions to glutathione supplementation. Grapefruit Seed Extract (GSE) is used as an antifungal. Will kill everything, including good bacteria; therefore, must be used with probiotics but spaced apart by a few hours. See Dana’s website for more information. Trusted brand: Nutribiotics GSE liquid. HN-Zyme Prime is an all purpose digestive enzyme. Made by Houston's. If bromelain (pineapple) and papain (papaya) are a problem, use Zyme Prime (no HN) instead. Immune boosters and immune modulators include thymic protein, colostrum, astragalus root, Echinacea, vitamin C, larch arabinogalactan, inositol, Epicor, beta glucan, elderberry, zinc, Transfer Factor. For more complete information on these and a list of antivirals, please see the Virus Information and Resources file. Inositol plays an important role in the health of cell membranes and although it is readily available in the diet, this may not be true for our children. It can be helpful for OCD. Inositol hexaphosphate (IP-6) can also be used to boost the immune system, but it is also an efficient chelator of most minerals, and that should be taken into account when using it. Some people use IP-6 if their children are iron toxic, or have some other similar condition. Iron should not be supplemented unless you know from testing that your child is very deficient; it can be toxic. Many people get constipated with iron supplementation. If your child shows low ferritin levels on tests, you may want to consider Energizing Iron by PhytoPharmica which is an absorbable and natural form of iron (but messy if your child cannot swallow capsules). Lecithin—see phosphatidylcholine. *Magnesium can improve constipation, mood, appetite, muscle relaxation, and sleep. It may also decrease tics and phenol intolerance. Citrate, malate, or glycinate forms recommended. Too much magnesium will cause diarrhea (although you should consider the form—not all forms will cause loose stool). Some children who have the “jack-in-the-box” or “flopping fish” syndrome as they try to fall asleep may be lacking magnesium and potassium. Often works best when used in conjunction with Vitamin B6. Some people supplement in a cream form or through magnesium sulfate baths (Epsom salts baths) if oral supplementation is not tolerated, although this method will offer very small amounts of magnesium. Children who wet the bed at night are often low in magnesium and supplement can often help this situation. *Melatonin is considered an antioxidant particularly helpful for the brain. Most ASD children do not make enough. Helps to improve sleep by allowing kids to fall asleep, but can actually disrupt sleep in some, particularly if too much is used. Only 1-2 mg/day is generally used; some parents see better results with time-released, although your child must be able to swallow pills to benefit from these. Good ARI rating. *Milk Thistle Extract can help support liver function, especially important during chelation. *Molybdenum can be used to lower copper levels, often high in ASD children (85% of them) and sometimes made worse during chelation. Mullein and garlic oil ear drops are a very effective way of fighting ear infections, a common problem among ASD children. These drops can be found at most health food stores. NAC (N-Acetylcysteine) is an antioxidant contraindicated for anyone with high plasma cysteine. It can also worsen yeast problems. It can be used to increase glutathione levels but will not detoxify the body on its own. NAG (N-acetyl glucosamine) is thought to help heal the gut by promoting mucus production in the gut. It has been shown to help with diarrhea and gut distention in children with constipation. Niacin is one of the B vitamins. It is a term which means both nicotinic acid and nicotinamide. High doses of nicotinic acid can cause a flush, resulting in vasodilation of surface blood vessels. This will increase blood flow, principally in the face, neck and chest. Nicotinamide is not associated with this condition. No-Fenol is a digestive enzyme for highly phenolic foods. May be helpful for those with phenol intolerance. Some people also give it away from food to help control yeast. Houston product. Olive Leaf Extract is an antiviral. Comes in liquid (strong taste, like green tea) and capsules. Some amino acids (glycine, lysine, histadine and cysteine—including NAC) might cause OLE to be ineffective. Do note that OLE will kill soil based bacteria found in some probiotics. See Dana’s site and Viral Information and Resources file for more information on OLE. Oregano (oil of oregano) can be used as an anti-fungal. There is evidence that it also has antiviral and antibacterial properties and is therefore a good all round product for many of our kids. Oxypowder is a popular constipation remedy. For more on this product, constipation causes, and other treatments, see Constipation file. Pantothenic acid or pantethine is the coenzyme form of B5, very good for adrenal problems and allergies, which many ASD children have. There are no known reports of pantothenic acid toxicity. Large doses (10 grams or more) may cause diarrhea. Peptizyde is a protein digesting enzyme that works for gluten, casein, and soy protein. Contains bromelain (pineapple) and papain (papaya). If these are a problem, use the AFP Peptizyde instead. Will not allow you to leave GF diet if you have celiac disease. A Houston's product. Phosphatidylcholine or lecithin can be helpful to the liver, brain (particularly in protecting the myelin sheaths), and digestive health. Powdered form is recommended or there are very pure liquid forms. Generally a soy product; however, egg-based forms are available. Some people choose to use glycerylphosphorylcholine (alpha-GPC) instead, as it is very similar but easier to dose because it comes in a powder that tastes better. Phosphatidylserine can be used to improve concentration, focus, and mood. Can also reduce “brain fog”. A soy product *Probiotics are supplements to replace the “good” bacteria in the intestinal tract destroyed from antibiotic use, stress, pesticides, malnutrition, and toxins. Some people use them alone to control yeast overgrowth; many people use them in conjunction with an anti-fungal. Come in capsule, loose powder, and chewable forms. If your child is casein-free, be sure to buy non-dairy. Try to use probiotics long before the expiration date. Some need to be refrigerated. There are a wide variety of probiotics, both in type and quality. What works for individuals seems to vary. Some people rotate their probiotics to ensure a wide variety of good bacteria. Most children require far more than the amounts recommended on the bottles. Protein Powder can be used to add protein to diet. Many children, particularly those who are GFCF may need more protein. Undenatured whey protein is an excellent way to boost glutathione levels but is not CF. Rice protein powder is a complete protein as well. Pea protein powder is also available. Some children, particularly those who may have problems with glutamate, may not do well on protein powders. SAMe does not have a good ARI rating. It seems to help only 1 in 5 ASD children. Selenium is an antioxidant mineral. If you're avoiding yeast, make sure to get "yeast free" selenium. Not all is. Selenium supports delivery of zinc to cells and the sequestering of mercury and other heavy metals. Use the selenomethionine form. Some ASD children are low in selenium, although exact percentages are controversial. The National Academies of Science established an UL of 400 mcg/day for selenium. *Taurine is an amino acid and powerful antioxidant and is needed to form bile salts (necessary to properly use vitamins and fats). It will also make your poop brown as it should be. Pangborn considers taurine an important supplement that should be in place before a number of others (unlike the rest of the amino acids). Can also counter chlorine intolerance, from swimming pools. Taurine given at bedtime can also help for calmness and sleep. Some parents have used taurine successfully to reduce or eliminate seizures. Trimethylglycine or TMG, like DMG has a good ARI rating. Pangborn recommends that you have taurine in place first. May cause hyperactivity. Suggested morning dosing. See ARI website for more information. See also DMG. *Vitamin A is often thought to help with visual stims and language. It is not the same as beta carotene. Beta carotene is the pre-vitamin A found in plants (a precursor to Vitamin A which healthy bodies convert—our children may not be able to do this). Many people use cod liver oil to supplement Vitamin A, thereby supplementing Vitamin D and the fatty acids as well (see essential fatty acids). Most recommended brand by far is Nordic Naturals. Must be refrigerated after opening and used within a couple months. Fish oil should not smell fishy. If your child doesn’t tolerate, you may consider a different form of Vitamin A (eg. Klaire Lab micellized Vitamin A). Vitamin A plays an important role in healing leaky gut; this may be of particular relevance to children who have suffered an adverse reaction to the MMR. Good ARI rating. Vitamin B1 is called thiamin. There is little danger of thiamin toxicity when it is taken orally. Vitamin B2 or riboflavin, is readily excreted in the urine and absorption by the digestive tract may be less than 20 mg for one dose. There appears to be no danger of oral toxicity. Vitamin B6 is also known as pyridoxine or pyridoxine-HCI. It becomes the P5P active co-enzyme form in the body, which is why some supplements recommended for ASD people are in the P5P form already. Shows best results when given with magnesium. (See ARI site, where B6 is highly recommended, for details). Adequate zinc is required. Give with food. May require amino acid supplements to work best—testing can show. Many phenol intolerant children have problems with B6; sufficient Magnesium may address this problem. Vitamin B-12 is also known as cobalamin. It is thought that toxins such as thimerosal can damage the body process of making methylcobalamin. Some ASD children respond very well to injections of methylcobalamin because they bypass the damaged gut and are therefore well absorbed. Injections are done after consulting with a doctor as they require a prescription. For supplementing with Vitamin B12 as methylcobalamin, Pangborn recommends that you deal with gut and food intolerance issues first, and that you have taurine in place before supplementing. Some children have adverse reactions (violence, extreme emotion) to the injections, but many children benefit (See Dr. Neubrander’s site for information http://www.drneubrander.com/page1.html) Parents may want to start with oral methyl B12 to see if it is tolerated well; however, a lack of improvement on oral mb12 does not mean shots will not help. Some people have also used the nasal spray effectively and there are some who have found that the transdermal is effective as well. Vitamin B12 plays a key role in crucial body functions such as methylation. *Vitamin B complex is a convenient way to supplement the B vitamins if a child tolerates each vitamin at the same level (eg. 50 mg, 100 mg). The B vitamins, particularly B6 with magnesium, are considered an important initial supplement. Sometimes B vitamins can be in the aspartate form: some people believe that as an excitotoxin it should be avoided, just like glutamate. *Vitamin C is a powerful antioxidant. Be aware that most vitamin C is corn based and that hypoallergenic vitamin C may be a good idea. Twinlabs Allergy C is made from palm for those avoiding corn. Perque makes Vitamin C from potato. Some people choose buffered Vitamin C for better absorption and better bowel tolerance. Others choose the unbuffered—plain ascorbic acid—because it can help raise stomach acid and low stomach acid is a problem for some autistic children (see constipation file for more information). Good ARI rating. Vitamin D is naturally produced by our bodies in response to sunlight; however, many children are deficient as great amounts of exposure to sunlight are required for sufficient levels of D. If you are supplementing with CLO, you are also giving vitamin D. There is recent research implicating the crucial role vitamin D plays in health (autism rates for Somali children living outside of Somalia in countries with little sunshine are astronomical). *Vitamin E is an antioxidant also known as d-alpha-tocopherols. If a label says "dl" instead of just "d", it means the vitamin E is synthetic and most people want to avoid that. Since vitamin E is fat soluble, any condition affecting fat digestion, absorption or transport can lead to vitamin E deficiency with associated symptoms such as greasy stools or chronic diarrhea. This population may need a water-soluble form of vitamin E. The general health risk of too much vitamin E is low. Vitamin K is thought by some to be an antioxidant. It plays an important role in making sure that calcium ends up where it belongs and some children have shown great improvement in tooth health with the use of Vitamin K, generally K2. Natural forms of vitamin K have caused no symptoms of toxicity, even when supplemented in large amounts. There is a yahoo group devoted to Vitamin K and the other fat soluble vitamins. Zeolites are a newer supplement that some people believe work against viruses, regulate pH, and help to chelate. Often known by a popular brand name Natural Cellular Defense (NCD) this supplement is somewhat controversial, but some people have seen impressive results. See the listserve http://health.groups.yahoo.com/group/autismNCD for more information. *Zinc often needs to be supplemented in ASD children. It can help to lower copper levels (85% of ASD people have high copper-zinc ratios). Also used to reduce visual stims and "mouthing" of objects. Give separately from calcium, iron, or folate. Best given away from meals in smaller doses. Citrate form is the same form as found in breastmilk and generally well tolerated but other forms such as picolinate or methionine are considered by some to be better absorbed. Can be found in liquid form also—please note that Kirkman’s liquid zinc contains propylene glycol, a chemical many parents would rather not to give their children. Some recommended brands are OptiZinc, Solgar’s zinc, and E-Lyte. Some people use a cream. Zinc should be given away from enzymes that contain DPP-IV as it may inactivate these enzymes. Good ARI rating It is highly recommended that you supplement four times a day—the body can only absorb water-soluble vitamins and minerals in limited doses, and giving them all at once is a waste and may be harmful Remember, this is not medical advice, just one recommendation. You will find different ones elsewhere. You must make the decision as to what is best for your child.

I was researching this weekend and came across this list of supplements that I thought might be helpful to some. I'm not suggesting anyone run to the health food store without working with their doctor - testing levels of anything you suspect as a deficiency is probably wise. But I found the information useful. EDIT - link didn't work. I cut and pasted the entire document on the Pandas forum.

I was researching this weekend and came across this list of supplements that I thought might be helpful to some. I'm not suggesting anyone run to the health food store without working with their doctor - testing levels of anything you suspect as a deficiency is probably wise. But I found the information useful. Edit - link didn't work - will post the entire list below...

We used Vitamin Diagnostics http://vitamindiagnostics.com/ They too require a doctor's signature. You need to be off supplements - those that contain any vitamins or minerals - for 5-7 days prior to the test. It's a 24 hr urine catch.

Wow - thanks for the site. It was like finding ACN in a parallel universe. Especially liked the very long KPU thread. Had a hard time biting my tongue on the Pandas thread. Think I'll lurk for a few days and see what I can learn. Thanks again!

Here's another discussion on pyroluria I found on LiveStrong - part of Lance Armstrong's organization... http://www.livestrong.com/article/465006-can-vitamin-b-12-deficiency-cause-pyroluria/

You may want to read up on detox options. When you start killing bacteria, they often release die-off toxins. Sopping up and eliminating those toxins go a long way in helping you feel better.

Given your positive results for bartonella, it makes those IND and + bands more suspect. In the Helpful Topics section, you'll find a few links to help interpret each band's significance. I think it's wise to get the body ready with detox. You've been doing some reading I personally like milk thistle for liver support, but you shouldn't take it if you have an allergy to ragweed (same family of weed). There's also a list of medications that contra-indicate its use, but most of the medications aren't given to kids. Maybe someone will post it - it was posted just this week on another thread. For gut detox, you can use chlorella or activated charcoal or bentonite clay. You can take chlorella any time, with or without meds. Charcoal and clay need to be taken 2-3 hrs away from abx. For brain and general detox, many use alpha lipoic acid (ALA). It's a good anti-oxidant and a precursor to glutathione - the grand daddy of the body's antioxidants. (Oral glutathione is poorly absorbed and there's debate on whether it's as effective - something for you to read about and decide). However, I've recently come across things that say ALA is also a strong metals chelator - great, I thought! Except that it can move metals both out of and into the brain, so maybe not so great. But many here use it and we used it up until a few days ago when metals come onto my radar. You can also look at NAC (but watch for yeast), SAMe, 5htP...but do some reading. If your daughter's on any sort of SSRI, these wouldn't be good detox supplements for her. For skin, there's epsom salt baths. My kids haven't noticed much benefit, others feel they help. Water, particularly with lemon, is always good for the body and the kidneys. Coconut water is something else I've come across but have no experience with. Also, strengthen the gut with probiotics. You're likely going to be adding more abx, so review what you're using and make sure you have a good blend and that it's in an adequate amount. I look less at quantity/CFUs and more at "output". If you have a well formed stool with regularity, that's a good sign. If you have loose stools or constipation, the gut may need additional support. As for changing abx, I like omnicef because it crosses the BBB. My DS (lyme/Bartonella) is on omni + zith. But we've also used bactrim, augmentin et al. Bactrim is a common one for bartonella. My DD is on zith + bactrim (she too is allergic to the cillins). The only issue with bactrim is it's taste. It dissolves incredibly quickly and if your child holds it in her mouth before quickly swallowing, it will start dissolving and has a nasty taste/texture. Can't tell you how many times that stupid pill was spit back out and I was left with a mushy blob that somehow had to make its way back into the body (we found smushing the blob into the cream of an oreo worked if push came to shove). The liquid doesn't have that problem. DD never complains about the taste. It does carry a small risk of photosensitivity, but with colder days coming, that wouldn't be an issue until next summer. The biggest advice I have is to not change both abx at the same time, or you won't know which one caused any change. I'd add one and give it several weeks. If you saw a change, particularly a herx, then I'd stay on the new+omni until the herx symptoms went away. Then I'd think about adding the second new one - but still keep the omni. So she'd be on a total of three abx for a time. Then drop the omni as the third/final step. Otherwise, if you drop omni at the same time you add another, you won't know if the response is from the subtraction and the omni was really doing a good job, or from the addition. This journey gets really confusing. So the more methodical you can be, the better. As for an LLMD, what sort of approach are you looking for - completely "western", using abx only, or integrative, or naturopathic? And is your preference closer to Philly or NYC? I can give you info on the northern part of your list and others can give info on the southern part. Which is your preference?

CandK - join the crowd - very confused here too. Maybe it's a good thing your LLMD appt was postponed. We see a different LLMD in CT who helped us find the KPU trail. But I have so much more to learn about it. Just be aware that as we all learn about this, it may be the forum disease du jour. Take our discoveries with a grain of salt. I don't think any of us have it all figured out. But it sounds like you sure have enough reason to learn more. I hope it proves fruitful!

For anyone interested, there's a Yahoo support group for pyroluria. Not sure if it's very active or helpful but figured I'd pass it along... http://health.groups.yahoo.com/group/Pyrroluria/ This is the introduction: Pyrroluria, explored by Abram Hoffer MD in the 50's, is named for the elevation of urinary metabolites with Pyrrole rings. Incidence may be as high as 10% of the population. It is thought to be genetic and run in families. Stress intolerance is a hallmark symptom. Members are encouraged to share all experiences, resources, ideas & information - little is considered off topic. Symptoms may manifest initially as behavioral & mood disorders. Associated degenerative disorders: Alcoholism * Allergies * Arthritis * Asthma * Autism * Bipolar * Cancer * CFS * Depression * Drug Addiction * FM * Heart Disease * Nightmares * Insomnia * Mood Disorders * MS * Poor or No Dream Recall Lacking a body of peer reviewed scientific literature, Pyrroluria is looked upon as a pseudo disease by mainstream medicine. It is therefore not surprising that patients resort to the exceptionally talented pool of holistic practitioners. For their dedication and perseverance we are eternally grateful. Children tend to be more easily diagnosed than adults. Symptoms range from the emotional & physical stress intolerance to anxiety, panic attacks, drug, alcohol & even chemical sensitivity, mood swings, depression, prostate issues, sensitivity to light, noise & tactile stimuli, schizophrenia, pain, seizures, adrenal tenderness on deep palpation, physical debilitation, paranoia and even criminal behavior. White spots in the fingernails, which can be intermittent, thought to be due to Zinc deficiency, may be an initial clue. There is a high need for & dependency on supplementation of Zinc, Vit B6, B3 and Gamma Linolenic Acid. Dietary sources are inadequate. Improvements are often noticeable within three days of supplementation. Symptoms may return in as little as two weeks of cessation of effective supplement regimens. Malvaria, Mauve Factor, Pyroluria, Pyrroluria, Pyrolleuria, Pyrrole Disorder, Elevated Kryptopyrrole, B6 & Zinc Deficiency, Urinary Pyrroles, Hemopyrrole, Indole, and Hydroxyhemo