Claire

Andy, On that site, someone commented on enzymes healing the gut. By the way, my son had low amino acids, so I am going to do the AFP peptizade for better digestion of normal proteins (not just gluten/casein), to see the impact (or not). Finally, Jennifer told me of chewable enzymes from Pfeiffer (thanks again Jennifer). I called Pfeiffer and they are the same Houston Nutriceuticals ones we take. So I just ordered some. They are just for the AFP peptizade (orange) and Zyne Prime (berry), not the no-fenol for yeast and fenols. Fewer pills to swallow is always better. I just ordered some and will let you know if the taste is good. I suspect it is. This will also allow better spacing between it and the probiotic--tough to push another pill 1/2 hour later. Claire

Kim, So sorry, you are right, I am getting your son's mixed up. Also, P5P is more absorbable than B6 --Pfeiffer says it is equal to 5X the B6. Other places say double. It isn't purer, just one step further down the chain. My doctor says it doesn't have the yeast aggravating issues that B6 can. However, apparently not everyone can do well with just p5P, it is a trial and error thing. I don't know the other answers, hopefully FJ will stop in. Other than with pyroluria, you need extra B6 or P5P due to the kryptopyrroles themselves depleting the zinc and B6 and taking it out through the urine. However, your child may not have pyroluria at all. Claire

Hi Kim, I am so glad FJ stopped in here--thanks FJ! In case she doesn't check back very often, here is what I found... That sounds like the Great Plains OAT urine test result--we had the same thing. Now I know with pyroluria, excess B6 is excreted in the urine. What I don't know is if it comes out as recognizable B6, so I would love to hear FJ's response. I do know that my son showed no B6 deficiency in that same type of test --nor a zinc deficiency on another test but he had pyroluria. (Later another test showed a zinc deficiency). Especially with your son's recent zinc reading, I think pyroluria is worth at least ruling out. Most people here who took the test showed positive, and it is only $48. We didn't get a doctor signature in advance, just gave his name to the lab, so you don't have to bug your doctor. If the test is borderline/positive, then I do recommend getting him/her involved though. If you do the pyroluria test, I like www.pyroluriatesting.com because if your child is borderline or higher, a Pfeiffer doctor will talk to your doctor on the phone and 'educate them'. The general rule per the lab is that for initial testing, no B6 or zinc for 3 days before the test--simply because they will mask the pyroluria. Claire

Hi all, Jennifer pointed me to an awesome website on enzymes. It is associated with autism, but the enzyme discussion is clearly applicable regardless of neurological issue. Also, I notice lots of discussion on yeast. A few mention Alka-seltzer Gold helping with die-off (Jennifer mentioned this also). They discuss food allergies, DAN and nutrients. It appears that the woman who wrote the enzyme book often answers questions--not sure, but the first name is the same and her posts are great. This site is nothing like here--it is overwhelming. My recommendation is to sign up for the email digest. They send out an email every day, or every 25 posts. Sometimes you get 4 emails a day, meaning 100 posts. This saves a lot of time clicking--you can go to the website. You can always cancel. Now that so many here are doing immune testing and treatment, some of the questions are getting beyond the experience of many here, I would suggest that if you don't get an answer. Some recent postings that got me thinking of this--where our 1. Jean on reaction to new supplements from DAN doctor 2. efgh on DT vaccine risk given likely immune issues 3. Kim on high alk ph. (though thank goodness FJ from Braintalk popped in, since she actually had experience there). 4. Andy's earlier questions on chelation--though I think the DAN paper address a lot. I am not pointing people away from here at all. In fact, I hope that if you learn something on your issue, you will please share it with us here! Also, let us know if one board is better. I am sure I will ask on the enzyme board at some point, given my son's low amino acids we recently discovered. I think the autism group in general has the most experience with treating immune issues. Yes, ours don't map perfectly, but from what I read, their regression and aggressiveness reactions to certain things could reflect as tics in kids here. I have never read the Braintalk board so don't know what it is like, but it is active. I just pay my DAN doctor a fortune for all my questions via telephone consults. And of course Pfeiffer. Enzyme board http://health.groups.yahoo.com/group/enzymesandautism/ Braintalk Autism board http://brain.hastypastry.net/forums/forumd...isplay.php?f=91 Good luck. Claire

I added possible zinc deficiency to this thread. I asked Pfeiffer their view on the white spots and they see a correlation, but it isn't hard and fast, and they said no correlation between number of spots and level of deficiency. Claire

Funny, I just read on an enzyme board that someone put enzymes in their dogs water and their flea problem went away. Don't know which one though, or if it was a freak thing. No idea on the other, not a dog owner. Claire

Andy, Our DAN doctor was going to compound the glutathione cream for us. I told him about Kirkman's cream, and he 'approved' it. Jennifer is the one who first told us about Kirkman (thanks Jennifer), and now I think 3 of us on the board use it. Layne does a glutathione cream, but I don't know from where. I don't know if you saw my update treatment thread, but after a year of oral glutathione and precursors (ala and cysteine), the cream was the first thing to significantly raise his glutathione levels--and in only a month. I am impressed. By the way, I mention Pfeiffer a lot because they see so many patients that they document the stats and theories really well. However, our primary doctor is a DAN doctor as you know--but newcomers may not. In our case, we needed both because I was interested in MT promotion and correction of undermethylation, and our DAN doctor didn't do those two. But then he does a LOT that Pfeiffer didn't do. I think it is nice to have a local doctor during metal removal. But not everyone has a local DAN (or environmental medicine) doctor, thus the Pfeiffer outreach clinics give them a path. Claire

Capsules are so much easier to swallow than tablets. Finding a copper-free capsule was hard. The ingredient list won't post, sorry. Seems to me a nice basic--finally. So many have lots of niacinamide--not good if undermethylated. Just a touch of manganese I think at least a little is still important, even for tic syndromes. But too afraid to do a lot. Nice mix of P5P and B6. Also, folinic acid instead of folic acid--one step further down the chain. Not enough zinc, fine with me cuz we supplement it separately. http://www.kirkmanlabs.com/products/multiv...ra_hypo237.html My goal is to cut back on pills, and this is cheaper than compounding. This won't meet all your needs, just a basic--my biggest concern is the balance of B's when supplementing individually. My issue with Bonnie's (I considered them as I searched) is too much niacinamide. IF Pfeiffer's 45% undermethylated in ASD number applies to tic syndromes, that much B3 is bad as niacinamide 'steals' methyl groups per Pfeiffer and the www.enzymestuff.com site Claire

Mary, IF there is a current metabolic issue affecting growth, here are things to consider. A zinc deficiency can stunt growth. So can gluten intolerance or a deficiency in alpha ketoglutaric acid. Or malabsorption in general. If your child isn't absorbing food for growth, he likely isn't getting the right nutrients for his neurological system either. I mention this because they can also exist with neurological issues. (though I don't think alpha ketoglutaric acid deficiency has a neurological impact, but it can be associated with yeast overgrowth, and yeast overgrowth can have a neurological impact. Supplements are a great piece of the solution, but you need the right ones. And you may need food elimination. If your son has these complicating factors, I suggest that you see an alternative doctor vs doing trial and error. There is a list on the thread at the top of this forum. In particular, for OCD, there is a clinic (Pfeiffer) that does outreaches in 5 states in the US that you can go to. They will go through a process of testing for methylation issues. http://www.alternativementalhealth.com/art...rticles/ocd.htm For $1000 at their clinic in Chicago, and $1200 at their outreach, Pfeiffer will run a number of tests on your child. We use an Environmental Medicine/ DAN (Defeat Autism Now) doctor who ran many tests on our son and uncovered a number of things. If you have a half decent PPO plan, much of it is covered by insurance at out of network rates. If you have decent insurance, the tests I recommend you ask an alternative doctor about are: FIRST www.labcorp.com blood test for zinc/copper levels www.elisaact.com for food sensitivities (eliminating foods can make a difference, and they test for 175 foods, including casein and gluten) www.greatplainslaboratory.com OAT for yeast overgrowth, low glutathione, and low alphaketoglutaric acid www.labcorp.com histamine test for methylation issues (OCD)--will guide you re Inositol/5HTP/SAME, etc... SECOND www.pyroluriatesting.com for pyroluria www.gsdl.com for metals. If you do try vitamins, please only try one at a time and watch carefully. I think it is easiest with a doctor since you are withdrawing from medicine. If you can't find one in your area/afford one, then read this forum inside out. Many of the same underlying immune issues can cause both OCD, tics, and PDD. Houston Nutraceuticals make enzymes that can help with nutrient absorption too. Good luck. Claire

(800-869-9160) (301) 493-4671 fax A kind soul sent me this info via PM. This pharmacy will compound pills and put it in a stevia base, with no artificial colors. To me it makes most sense for Nystatin, or anyone with yeast issues. Even the antibiotics in sugar solutions. Curiously, the pharmacist said that often insurance will cover the compounding of supplements IF something that requires a prescription is included. Some companies put a $50 cap on the compounding anyway, it varies. This pharmacy did the compounding for Pfeiffer for years before Pfeiffer started to do it themselves. Not all supplements can be compounded. It makes no sense to me to compound calcium since it is inherently bulky--more the things with fillers. You really need to have settled on a program before you compound, or be set on a 3 month plan. e.g. this is not cheap and don't do it until you know your child won't react to certain vitamins. We are ordering some and it should arrive next week, and I will let you know how it tastes. If not good, we will just do capsules. I think you can just get a powder (e.g. to dump into smoothies), but then you would want to not put in the fowlest tasting pills. Claire

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Good for you for taking care of yourself Dara! And it must be easier on everyone when he is doing better. To me, my top things that theoretically I can control that help me through tough times are: 1) vitamins 2) workout 3) good nights sleep 4) feeling like I am at least taking steps for him on this journey vs feeling lost and powerless. Claire

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http://www.latitudes.org/forums/index.php?...p?showtopic=452 This is the thread where Heather answered some of my own questions on her experience with Threelac. Claire

Brandi, There is LOTS of help for your son. The information is on the Tics and Tourette's forum here: http://www.latitudes.org/forums/index.php?showforum=1 You can read some of the info there and post questions. PANDAS is an immune issue and the tics board here is mostly 'immune issue' driven. A number have PANDAS and have seen substantial improvement--for some the tics are very minor now. As Alison mentioned, she started a thread on PANDAS there which discusses her path to success (a major improvement for her child). Here is her thread: http://www.latitudes.org/forums/index.php?...p?showtopic=973 One path is to find an alternative doctor who focused on the immune system. They do tests and supplements to support the immune system so that the antibiotics don't need to go on forever. In fact, they can cause yeast issues very often, so you may need to treat that too. Here is a list: http://www.latitudes.org/forums/index.php?...p?showtopic=565 Again, the best advice I can give is to go to the tics board and read and ask questions. It is more active than here. To me, it doesn't matter if it is tics or OCD, the way to healing for PANDAS is through the immune system. Claire

Heather had awesome success--you should PM her, she is too busy to read/post lately. I use it myself in spurts, but I have never measured my results. Very tough to tell for sure, but I think it may help. I was unable to find yeast studies, but found these below which are encouraging, since allergies can be related to yeast. http://www.nutraingredients.com/news/news-...-NG.asp?id=8141 http://www.mayoclinic.org/sinusitis-rst/fungi.html It does contain brewers yeast, which someone said their child was allergic to. Claire

efgh Looking at my test results, we did the Doctor's Data hair test to show normal iron levels, so I figured I am giving him just the right amount. Labcorp.com test includes red blood cell count which I think may indirectly indicate it (it was normal). Jennifer is the real expert here, I would post to her. [she understands how it can be too high yet not absorbed properly I think] I am curious what Alison did. I know our doctor tested this for my husband at our local lab--they test for anemia all the time. I will try to ask Pfeiffer this week also in case we should do extra testing to be sure. Sorry I don't have a definitive test for you, since I think it is good to have one. I did the DT vaccine well before I knew about any of this. Our next DT vaccine isn't for due 3 years. Don't know how I would feel now--I would have to ask our DAN doctor. I know he wanted us to delay the Hepatatis B vaccine until our son's immune system was better, but then we found out our son had been given it already--years ago. Claire

Hi Kim, If you have a choice, I would do the urine test. Great Plains is the best known for the yeast tests, but I am sure that Great Smokies is fine I like Great Plains because they will show glutathione levels too. Being low here is VERY common, and would hint at metal issues---or not. I have read time and again that being wet at night often relates to foods. You have so many factors going on, it is impossible to pin things down, but with a sore throat and no cold symptoms, I would definitely get a swab. For your eldest son, the allergy testing for normal IgE immediate response is a good idea. Dermal issues are associated with the IgE test. It is foods that cause neurological issues which seem to show only in IgG (delayed reaction) test. As for the moods, I know what you mean, tough to separate puberty from other issues. Does he eat things with artificial ingredients? I think that can be a mood trigger for sure (molds too). efgh re iron efgh--some kids have too much iron, some not enough. I don't think you can generalize that it is bad or good. For example, I read that adhd kids are often low in iron, and yet some autism kids (I think a third?) have too much iron. The point is, you need to determine what is right for your own child. I prefer testing myself, but not everyone can afford it I know. Alison, Somewhere I started a thread on liquid and chewable vitamins and listed the ones that came in liquids. I wish I could find it. Jennifer pointed me to a zinc sulfate cream from Kirkman Labs. I know how hard it is. The best thing I did was moving my son to a chewable cal/mag tablet--that saves a lot of pills. I also to a chewable iron. He didn't seem to absorb the chewable C well enough so I switched. Kirkman has a liquid multi. Yes absolutely you can dump capsules into something. You will want to taste test the ones best for this. Some taste horrible and will overpower anything. Jennifer also gave me a great tip recently: Pfeiffer's pharmacy sells a liquid now that you can dump your capsule content into. I think that unlike the ones at normal pharmacies, there are no artificial ingredients. Definitely worth checking out. I thought the Kirkman Lab liquids tasted not very good, except the TMG one. Claire

Andy, I am glad you are posting publicly. No active poster here has gone through chelation and everyone will learn from it. Perhaps you saw mercury the first round because you have already been supplementing antioxidants so the mercury was already mobilized to some degree. For me, I need to get my mercury fillings out. I kept waiting for antioxidants to come up first, but will move forward even if they aren't. My case is somewhat similar--I have this unlimited mercury supply in my fillings and won't get better until I get rid of the source. Good luck. Claire

We don't do a multivite, but give each individually. I would love to do one someday, but the multivites always duplicate the things we are asked to supplement. So he has no other supplemental iron source other than the 2x/week I give him at the RDA levels. I have the conflicting research on some having problems with low iron and others with too much iron. His most recent hair test shows him at the high end of normal, so I assume he is okay. There is a fingernail 'test' for iron too. Ah, those telltale fingernails. You look at the nail bed above the white half moons and it should be slightly pinkish, not beige. Or you can pull down the lower eyelid and look inside the lid and it should be pinkish not beige. Easiest to do when comparing to someone with normal iron. Even so, I wouldn't supplement based on this. My husband's looked awful and colorless compared to my son and I and his tests showed normal. Jennifer knows more about iron though and conflicting test results. Kim, If you are reading this thread, Pfeiffer's paperwork called '90-150' the optimal level, and said he should be at 120--in the middle of the optimal level. This may be just their medical opinion based on their practice--though after treating 20,000 children, I give them some credibility. I do know that our DAN doctor in general says that antioxidants should be above the middle of the range for these kids, so that is somewhat consistant (zinc functions as an antioxidant). But maybe Pfeiffer just differs from the norm on what is 'adequate', and some feel that 76 is normal. Maybe your doctor can call Labcorp, as Labcorp won't answer direct questions from patients like most other labs (I tried myself for something else).

Alison, I am glad you are holding off on antibiotics in case it isn't strep. I just said a prayer that it isn't. I went through this strep horror/scare last year as it cycled through my son's class 5 times!! Even better that your son is faring better this round--certainly a good sign. I am really glad you are factoring in allergies more and more. You and I are much in agreement there...some of these tics could be just allergic reactions, e.g. the eye irritation and the drops. My ENT doctor said that coughs can be a form of asthma or allergic reaction--I think of kids whose parents took them to a neurologist for a cough and had it labeled a vocal tic erroneously (I realize it can be a vocal tic, but to assume that?). Especially now that we are all seeing more and more the depressed immune systems and high allergies these kids have anyway. I didn't know that about your child's kidneys...wow, what a rough start! I just picked up some new business so I am trying hard to disappear again...it'ts end of Spring Break here so I took a little time off. Claire

We had a friend very familiar with molds. Plus we treated (not good enough the first time) and it grew back over time. Certainly a stain wouldn't do that. http://www.natlallergy.com/allergy/product...ld_Control.html We did the spores in the air one, I hope there is another one more suitable. Anyway, I callled a mold expert who said bleach killed it. The first time we did 1/2 strength bleach, and it grew back. The second time we did full strength bleach and so far it has stayed away. We had painters do it with the rollers. Good luck. Claire

Lisa, ZINC What zinc test was this? Spectracell blood test? A hair test? My son, with white spots, showed no zinc deficiency with the Spectracell or hair test, but the Labcorp.com serum test showed him zinc deficient. My husband had no white spots, but the Spectracell test did show him deficient. I don't know exactly what to make of this, but I know that our doctor says tests are just different enough where you sometimes need multiple tests to uncover something. I like the labcorp test best myself. Sorry if I forgot, but did you test for pyroluria? IRON Iron is brought up by Vitamin C. Apparently you need adequate vit A in the diet. As mentioned before, it is not good to take iron with zinc and calcium--absorption is impacted. Here is more on iron, including the reaction with other elements. http://lpi.oregonstate.edu/infocenter/mine...iron/index.html Vitamin C (ascorbic acid): Vitamin C strongly enhances the absorption of nonheme iron by reducing dietary ferric iron (Fe3+) to ferrous iron (Fe2+) and forming an absorbable iron-ascorbic acid complex. Lead toxicity Iron deficiency may increase the risk of lead poisoning in children. A number of epidemiological studies have found iron deficiency to be associated with increased blood lead levels in young children. Iron deficiency and lead poisoning share a number of the same risk factors, but iron deficiency has been found to increase the intestinal absorption of lead in humans and animals. However, the use of iron supplementation in lead poisoning should be reserved for those individuals who are truly iron deficient or for those individuals with continuing lead exposure, such as continued residence in lead-exposed housing (3,16). Since my son doesn't eat the fortified cereals, we do supplement iron a couple of times a weak. General rules are just that: general. If your child has a deficiency, you need to supplement --assuming your doctors agrees, and I can't imagine they wouldn't? I know for some too much iron is an issue, but I have read iron deficiencies can be associated with adhd (do a google search). Good luck. Claire

Kim, According to Pfeiffer, 76 is NOT normal zinc at all. I had the same sheet from Labcorp and interpreted it the same. My son's zinc per Labcorp was 70. Pfeiffer says that is just the testing range listed, not the normal levels. The normal range is 90-150 mcg/dl for the Labcorp test. Furthermore, they look at the copper/zinc ratio, and my son's copper was in the normal range, but the ratio was off. Take your copper number and divide it by the zinc number. Per Pfeiffer, it should be .7 to 1.00. Thus they said my son's zinc needed to go to 120. Someone else here who went to Pfeiffer had almost exactly the same stats at my son and the same recommendation of zinc at 120. For my son, they wanted his zinc supplement at 75 mg/day, though I do 50 (occasionally 75 mg, e.g. during a growth spurt, when more zinc is needed). I think the other poster had the same zinc supplementation recommendation as we did. However, I am sure it varies by age and weight (and copper level as well as zinc level). My point is, based on Pfeiffer's input to us, your child is low in zinc. It sounds like you have a regular doctor doing this, not a specialist, so you might want to get a second opinion from a specialist. Right now it sounds like you aren't concerned due to low tics, but if it comes up in the future. Zinc affects more than tics--low zinc can stunt growth and affect attention too. Claire

Bumped for Karen--please read the first post... Claire