Claire

Hi Jennifer, I know, me too (glad re no doctor signature). We retest every couple of months. That way I can play with the minimum dosage it takes to keep it below 10, vs Pfeiffer's very high recommendations--especially the B6. Good luck with your younger one. Not a bad idea to retest annually or when symptoms show. I still think it odd, given the familial link, that my son had pyroluria and my husband and I didn't, yet my husband and I both had B6/zinc deficiencies. Go figure. Claire

We have done Nordic Naturals caps for some time and just switched to the DHA in the last 2 weeks. It should help tics! However, each child is different. Some react to fish oil Dara. Just try it and watch. Bean after your comment about chewing them, I just now bit into one and nearly gagged from the fish taste. LOL, your child is amazing! Claire

www.pyroluriatesting.com You can give them the doctor's name, but order the test yourself. I tell you, that seems to be quite a 'real' thing for those that test positive. Since this became positive, we now see a zinc deficiency, even with supplementation, so we need to bump up the supplements there from 25 mg to 50 mg. I am glad we retested during a time when the yeast was worse. How are things going with your son these days? (this is Jennifer_M, not the first Jennifer, yes?) Claire

Spartan, Good luck and keep reading the threads for ideas. Glad you found initial encouragement. It will take some trial and error, but really the vast majority on this site have found great improvement. The fact that you go years without issues to me gives great hope. Please keep us posted. You see, over time, others will learn from your successes. Please keep in mind re the allergy testing, it is the IgG (delayed reaction) that seems to impact tics most, not the IgE (immediate reaction). Both are blood tests. www.elisaact.com does the IgG test. Easier to me that trial and error elimination--IF you have the insurance/finances to do it. $300, covered by insurance, max $90-$150 out of pocket, and they test for 150 foods. However, I would make sure it included gluten (wheat) and casein (milk), those are very common. Claire

IgE is immediate reaction (allergy) IgG is delayed reaction (sensitivity) Unfortunately, the two don't seem to overlap. IgG is closely aligned with tics--I recommend this one. Claire

Spartan, My best advice if you have good insurance is to either: 1. Read through these threads, and ask questions... 2. Go see an environmental doctor that tests for and treats underlying conditions and uses supplements to heal them. This is usually more effective and systematic than trial and error of vitamins. Your profile (allergies, etc...) is similar to our kids who have seen great luck. You may have elevated metals for example... http://www.latitudes.org/forums/index.php?...st=0entry3404 I am bumping two threads for you. Good luck! Claire

Spartan, bumped for you. Claire

Spartan, bumped for you. Claire

Flaxseed oil has lignans which can irritate the bowels for some (good for constipation though). First I would go off it for a few days under no more diahrea. Then I might switch to the capsule form and try taking only one capsule and see how you do. Someone on Braintalk says it is best taken with a protein. If you still have problems then maybe it is the oil and maybe a fat enzyme would help? I think of this because I have a vitamin E deficiency--even after supplementing, and read that some people don't digest the fats well. Finally, some people with pyroluria don't do well on Omega 3's but need Omega 6's. I haven't heard of diahrea though. You can take the test, or just try the mixed EFA's (Essential Fatty Acids---Omega 3/6) that Chemar and Ronnas mentioned. We tested for EFAs so that we knew which ones to supplement. Claire

Lulu, You are so right about those ratios... they are very important. Guess what, Pfeiffer recommended 500 mg calcium and 500 mg magnesium, or a 1 to 1 ratio! We do a minimum of 2 to 1 cal/mag and sometimes slightly more magnesium than this. Too much magnesium causes diarhea. I have heard some say give as much as they would tolerate without diarhea, and split the dose of magnesium. Claire

Sorry for your lack of success. I assume you are also eliminating artificial ingredients? I think it is critical to continue the detox, though our DAN doctor did it slow and gradual. The lead/aluminum detox and yeast are definitely needed. Did your DAN doctor retest for the yeast? This made a huge difference for Heather's son. Unfortunately yeast can be very stubborn. My other suggestion is to do a labcorp.com test for methylation. undermethylation seems to be common with tics and this needs separate treatment. Ask your doctor about TMG. Finally, a pyroluria test (sorry I can't remember if you did this). Re screens--As you know based on our experience---I saw no correlation with TV/screens until I removed them. Plus this was the ONLY thing we had to do for our son. Guest_Jennifer's son actually seemed BETTER while playing computer, but the major tics all disappeared when she removed it. My son was 8 when we removed screens and it wasn't cruel at all. I just loaded him up with comic books and Harry Potter tapes during the trial, and made arrangements for a ton of fun activities with us and friends. For him the diet restrictions and supplements were the 'cruel' part, but every child is different. You know your child, and if this is too cruel, you could just go to COSTOCO and buy a cheap LCD TV/computer monitor and try it with the brightness down (no visible difference) for a couple of weeks and see if any improvement at all in tics occur and then reassess TV as a possible trigger. However, that is only removal of a trigger--you still need the healing. Claire

I use Solaray. but am considering switching to the calcium carbonate that Pfeiffer will compound. Solaray has a great number of choices. We did calcium citrate with vitamin D. But he was deficient in vitamin D also. Obviously with calcium you need some magnesium for balance. We do the magnesium taurate. He was 80-85 pounds and we did 750 mg Calcium, then cut back to 500 mg when the deficiency was corrected. The daily calcium requirement for that age is really high, but I don't have the number handy. So it was not megosing at all. Yes, Spectracell was the test we used. Claire

We have been doing calcium citrate. However, FYI Pfeiffer recommends Calcium Carbonate, and in searching re osteoporosis for my mom, I read this is the most absorbable form (other than the MCHA which I don't want to do because the magnesium is in there and I want the mag taurate). Claire

OH my gosh, Jean!! I take allergy shots--I have for 20 years, and I have elevated mercury. I will ask my allergist and my DAN doctor about this and let you know, though as with the flu shots, this could vary. If they do, then by by shots. In the short term I notice my allergy symptoms improve, but it didn't even occur to me, I can't believe it. Thanks for thinking of this possibility! I will be so bummed if they do. Claire

Susanna, My son used to drink 4 glasses of milk a day, plus cheese, and he still had a calcium deficiency! We then found out about his sensitivity to milk and completely removed it from his diet. His only source of calcium was through supplements (capsules), though he occasionally had cheese, 2x/week. We retested him 3-4 months later, and the calcium deficiency was gone. So obviously the calcium pills were a better source for him. Claire

Hi all, I hear so many parents complain about gettting supplements into their children. Well, I just found out that the Pfeiffer clinic pharmacy will take an out of state prescription for vitamin compounding. 800-505-2842 Most of the bulk in the vitamins is filler. Especially those mcg ones. I think it may costs 3x as much per capsule. I haven't done a direct comparison with Pfeiffer. Some inherently bulky things like calcium/magnesium, don't make sense to compound, since you don't gain anything. I know how much we gained just going to a B complex from separate B's. I figure if we are lucky the total pill count is cut in half (due to bulky ones). Most local compounding pharmacies don't do this--I have called around, since they don't have acess to the raw vitamin without the filler. Remember, you need a doctor's prescription! And if someone identifies a cheaper source, let us know. Obviously Pfeiffer does a ton of this. Claire

jc WOW! Thanks for posting that. Very impressive. We have individual accupuncture success stories (e.g. Chemar), but never a study. Claire ps re LCD TV's on the other thread, COSTCO is just a big discount store. Sam Club is the same kind of store. The cheapest I had seen was $450 for the duo monitor/TV, so the $200 price if true was pretty exciting.

Hi Mary, We tried the plastic covers a long time ago, they were terrible and a waste of money for us! Thank goodness they 'invented' the allergy proof cotton ones, I am very impressed. When you say dustmites are bad for your son, do you mean asthma or congestion, or actually a tic trigger. For us, we notice the congestion big time, but never tics. Chemar noticed it as a tic trigger. Though I personally am convinced that carpeting can be a mood changer, and though air filters help, it doesn't completely change it. It makes sense that anything that raises histamine levels could be a tic trigger, but trying to get a real-life sense from people who notice a reaction. Claire

Hi jc, I have been out of town, so just now catching up. But your observations would imply that your son does have photosensitivity (via tics) to the CRT TV monitor. The thing about this is, the impact can linger for days, even though you only notice the jump during TV. A friend just told me that their COSTCO is selling a 17" TV/Computer LCD combo monitor for only $250+. Some unknown brand. COSTCO's return policies are generous, so it might be worth switching for 30 days to the LCD TV viewing and see if you child's overall tic level is reduced. Claire

Glad to hear they have a warning! Yes, TS is a neuro condition. In fact, I read that tics were the one thing actually correlated with the mercury. Claire

www.craigslist.com You can advertize a job/part time work for $75 and will get a boatload of emails--better than phonecalls. I too have used this, but for business. When I looked for childcare, the place I had the best luck was the local university. Seemed to get energetic, intelligent people, whereas newspaper ads were a disaster. Who knows, maybe the same for a nutritionist? Good luck. Claire

Hi all, Just got back from my trip, will be in and out. efgh, Whole Foods carrries a Heinz ketchup brand with cane sugar vs corn syrup. They carry another brand too, but we don't care for it. Don't know about us reacting, but I am definitely allergic to corn sugars, and corn syrup--especially high fructose seems like bad news to me. Claire

Hi Dara, To me it is the smell of the carpets that would worry me...that shows that it is outgassing or whatever the proper term is. I am probably not the best person to talk to about carpets because I have such a strong allergic reaction to them. Dr. Doris Rapp had terrible stories in her book about a family with bad carpets. They sent the samples to some testing place, where I guess they let mice run on it and the mice couldn't even stay alive long enough to finish the test. From reading her book, it wasn't a matter of getting used to it (assuming that it had a negative impact in the first place), but more whether the carpet stopped putting out the odors (and thus releasing the chemicals) over time. The tough thing is that it is difficult to assess impact of the rugs on your own kids without having a baseline. ie low/no tics and then see what happens when he spends time there. So the tics started before the painting. Did they get worse over the few days after the painting? Interesting your comment on wool, because I am allergic to wool and we have wool area rugs. But they are tight weave and had no odor. But we have none in the rooms that I hang out in. So the store doesn't allow returns? I just don't know your financial situation and your child's sensitivities. My son and I are both sensitive, so we just do not use any rugs, and definitely not any with an odor. So here is my thinking: Can't you air out the house from the painting, and temporarily remove the carpets, do the no screens week starting Monday, and if your child has improved at the end of the week, then bring in the carpets and let your children play down there with the carpets for a few days because you are more likely to notice a reaction? If there is one, then you have your answer. My biggest concern right now is that you have a lot of factors going on to sort through. Quite challenging. By the way, that low VOC/odor paint is great, the smell is really completely gone by the next day, at least for us. Are they wood floors, or more like a cellar? We leave our wood floors mostly open. For a 'pavement' floor I guess it would be different. I don't know how to use the features here. No one cares about typos, so I wouldn't worry about spellcheck or preview. There is an edit command in the top left so you can always go back and correct a post afterwards. No, not in NJ, wrong coast! Claire ps We are flying out of state tomorrow for a long weekend, with no email, so I will see you all on Monday! Happy Thanksgiving!

We tested positve for pyroluria, but my son only had tics from computer so they were gone anyway. So I can't comment on symptom change. We don't do nearly the doses FJ does though--as Heather put it, I think it is because we 'healed the gut' for better absorption first. Or maybe just different chemistries. We do 125 B6 and 50 mg P5P, plus 25 mg zinc daily, and this keeps the pyroluria in check (based on continued testing to find the minimum). Be careful to watch the B6, Heather's son noticed the tingling--possible neuropathy, and the doses were not high! I am not sure whether anyone else on this board (at least regular posters) even took the test and showed positive. I am interested too.I think people saw improvement with B6, but never actually took the test. I do think it is real and read that 30% of kids with adhd have it. Claire

Dara re painting YES!! Paint is a horrible horrible trigger for some. Buy low VOC paint (low odor paint). We actually moved to a hotel for the week they painted our house--I wanted no part of that. But I am more extreme than some. Probably I think most major brands (Benjamin Moore, Kelly Moore) carries this. They use it at hospitals, for obvious reasons. THey sell low VOC/odor primers also. I do believe if the tics are worse right now that this could cause it. If it isn't too cold, maybe try to open some windows and ventilate, or get him out during the day when possible, and run an air filter in his room at night. The tics that hurt are the heart breakers. I am so sorry for you. Good for you for picking a good time re the no screens trial. Evangelia, Yes, you are an expert now! Great advice you gave. I like the 95% part you and Ronna discuss. We do the same thing. And very interesting to hear about the TV reintro. Soooo many of us notice grumpiness associated with it (except the pre-teens, who are grumpy when it is taken away too, ha). I think you were smart to have the TV 'break'--no trauma or bad feelings or week long arguments that way. It is probably the one 'white lie' that I have ever run into where I thought it was justified. Glad to hear your child can tolerate a bit daily. I am sure this varies a lot, and I am sure you will keep a watch on it. I personally view it as a sign that the 'healing' is going well. We have some on the LCD monitor now with no problems. Haven't bothered trying the CRT screen--no reason to do so now that we have the LCD. Claire