Claire

Thanks Mustang Carole! I just spotted the corn dog recipe--I have wanted one of those forever! Lots of choices, and well-organized. Claire

That is a lot more B's than I would be comfortable with. We do one 25 mg B complex a day, which has 400 mcg folic acid. You are way over the folic acid levels recommended. We did a vitamin deficiency blood test (www.spectracell.com) and customized our program. But even with a folic acid deficiency, we didn't go over 800 mcg/day. I hope you are doing the sublingual B12 with the folic acid--it can be dangerous otherwise. (google B12 + folic acid--never take a posters word for it of course!). Also, the NIH recommends no more than 100 mg B6/day. As Chemar mentioned, known pyroluria might up this need. (www.pyroluriatesting.com). Based on our known deficiencies/issues, we add pantothenic acid and B6. FYI, most of the regulars on this site do some sort of daily vitamin supplementation for their children. We do eve primrose oil but also fish oil (some do flax seed oil) for Omega 3's. Also, I would add zinc to the list at 25 mg/day. We do 250 mg mag/500 mg calcium, but others do more, and it depends on what calcium your child already gets in their diet. For a while we did more calcium--but there was a known deficiency. Both tests I mentioned don't need a doctor's signature. I wouldn't do the pyroluria test unless he had the symptoms (google pyroluria + symptoms). This site has a ton on vitamins and other support for tics. Here is one summary thread... http://www.latitudes.org/forums/index.php?...p?showtopic=798 Plus Chemar's vitamins and treatments that worked for her son http://www.latitudes.org/forums/index.php?...p?showtopic=687 If you go through the archives, you will see posters such as efgh, Heather, Ausclare, Ronnas, Chemar, Andy, Jeff, Frank Smith post things that worked for our children. Good to compare notes. Vitamins can be an important part of the program, but most of us required other methods--at least at the beginning. This is definitely a process, and this site is a good support network. Claire

jc, Could you be more clear...50 mg of each B vitamin, e.g. 50 mg of B3, 50 mg of B6... Then 2x daily, so the daily total is: 100 mg B3, 100 mg B6...? I wish you the BEST moving forward. Hope you let us know how he is doing. Claire

Hi Debbie, GREAT analysis. You are lucky to have been able to pinpoint this so clearly. Mainstream neurologists generally don't know about these tic triggers. Alternative MD's do. But it doesn't matter--you know your child. I want to point out the possibility of mold also--since you mentioned he spent time in your basement. He can have a sensitivity to both mold and the formaldehyde or carpet fiber or carpet cleaner. In either case, the filter is a great solution...though Frank Smith and I are sympatico in hating carpets period. Frank, we got rid of the carpeting before we even moved in, ha! Of course, this was for me, but that's how much carpeting affects me. Vacuuming with a HEPA filter vacuum regularly is another idea if you can't afford no carpeting. I have standard Honeywell filters for our bedroom, but for my son's room I got this one that claims to also be good for chemicals...we were painting, and though I used low VOC paint, I wasn't taking chances. It is very quiet--the negative is that I don't know how to clean it--time to learn very soon! I must admit, I did this based on the claims rather than independent research on the differences. http://www.natlallergy.com/allergy/product...r_Purifier.html Also, interesting article on air filtration alternatives... http://www.natlallergy.com/newsletter/aug2004.html Claire

Caz and Marina, What elimination diet are each of you referring to? (Marina for your first week--I know later was Feingold and Caz now) No corn/milk/wheat/eggs (the list people here reacted to) or the Failsafe diet (no artificial ingredients and fruits (except pears)...or does Failsafe eliminate corn/eggs...etc? (I know Caz mentioned they didn't cut out gluten anymore). I am asking because 1) we will ALL benefit from knowing exactly what you cut out. and whether it worked or not, and 2) just being specific may raise good ideas for you from others. Marina, is the diet you did the first week the exact same as you are doing now? Or could this be another variable? Sorry, since I don't know Failsafe totally (to me it is Feingold (no fruits/certain veggies/no artific ingredients) + no amines. So maybe this IS an elimination diet such as my own allergist had. Thanks. Claire ps Caz, I wish so much that you could do no screens for a week. 2 others with a PANDAs dx (Heather and Ronna) really saw a big difference at the time. For my son, this was 100% of the issue. The food helped with a minor bit of fidgetiness later, but really, screens was the only and complete solution. I know you are doing LCD, but for a while my son had to limit that and even eliminate it. At least you and he would know-- if it 'failed'--then you wouldn't worry about it or sweat it when he played. No bribe good enough? But I know I know I know about this and pre-teens. I am lucky (not the right word though) that my son was only 8 when we did this.

Marina, Did I read this correctly: Initially you cut out ALL screens, plus a number of other things. The tics went away by 80%. You then reintroduced some foods and saw problems. So you started an elimination diet again and at the same time you reintroduced TV (but not computer games). 5 days later, the tics started again and they have been going on for 5 days? If I understood this correctly, then here is my 2 cents: Given that the prior food elimination didn't cause worsening of tics, only improvement, I wouldn't think removing them again the past 5 days wouldn't cause any 'detox increase' So it is quite possible that the reintroduction of the TV itself could be an issue. While some see an instant reaction from a reintroduction, it sometimes takes several days--or even a couple of weeks for the cumulative effect to show as tics, so it wouldn't be odd for the tics to show after 5 days. This was the case with him at one point. The biggest problem with the 7 day plan is that reintroducing things must be completely methodical to see what the main triggers were--and for school age children, life intervenes! It sounds like you have narrowed it down to 2 things though: the TV or the stress. But you do have a way to find out--remove the TV also for a week. I know this is tough. My son use to tic more from stress, but again, with no TV/screens, he didn't tic at all, regardless of the stress. What I must say I would do is to remove the TV again (my 2 cents, no offense if you don't agree). It won't take the whole week to start seeing improvement (and hopefully he isn't getting computer/screen viewing at school now that you are back??). If he does improve, then if you can afford it, you can try an LCD monitor. If you have a laptop--try a DVD on it (lower the brightness, then view it as a TV, from a few feet away in a well lit room) and see if he reacts to that. When we first started, we had to even limit LCD viewing. Now, with the mercury/yeast/gut healing/vitamin treatments my son can have unlimited viewing. He also is back to eating all of the foods he was sensitive too (there were twenty of them) except wheat and milk (he does have cheese). efgh, Ronnas, Heather...all removed the triggers once the healing occured. Of course, tic awareness can cause some pressure and regression for some, so this is all quite delicate. If removing the TV doesn't do the trick, then stress becomes the leading contender. Of course, stress can cause other health imbalances, so it has a direct and indirect effect. Good luck, Claire

I know that if you either eat too little protein, or don't digest it properly, then your amino acids can be deficient. If you already eat plenty of protein, you might consider supplementing with the enzymes for proteins (Houston Nutriceuticals and Klaire or Kirkman) and see how you feel there. If you don't eat enough protein, I would work on that issue. Given your food allergies, you probably do have digestive issues. Claire

Caz, Check this out from Kirkman labs--reasonable explanation of the enzyme for phenols/salicylates --"A salicylate is a type of phenolic compound." Phenol Assist Product Class: Enzymes Phenol Assist Capsules 90 ct. $25.00 835/90 Description Phenols are compounds with a specific chemical structure (an aromatic ring plus a hydroxyl group) that are found in fruits, vegetables, some grains and nuts, flavorings and spices. A salicylate is a type of phenolic compound. Phenols and polyphenols have anti-oxidant qualities and protective functions which make some of them beneficial and desirable to consume for most individuals. An important chemical process that occurs in body tissues is called sulfation. Sulfation is the movement of sulfate (sulfur plus oxygen) ions from one body tissue to another. Sulfating molecules change that molecule's character and behavior and how they act in the body. Connective tissue is sulfated for structural reasons and neuron tissue is sulfated to provide a protective sheath. Sulfation also causes molecules to vary in activity, solubility, and mobility. For the body to work properly, these sulfation processes must occur as they are required. So what is the relationship between phenolic compounds and sulfation? Phenols and salicylates use up a lot of sulfate in the body in order to be broken down. In other words, the phenols and salicylates compete for the body's sulfate stores. In certain individuals, breaking down phenolic compounds can provide a benefit by supporting the sulfation mechanism. Phenol Assist is an enzyme product designed to help digest part of the cell wall structure of plant cells, the structure of fruits, vegetables and grains. Doing so opens the cell and allows the process of phenol digestion to begin. When you slice open an apple or a pear and let it sit out for a while, you will notice a browning of the tissue occurring. That browning process is the result of the natural enzyme present in fruits, "phenolase," oxidizing the fruit tissue. This process cannot occur until the cell wall is broken and oxygen gets into the cells. Phenol Assist gets this process going and therefore supports sulfation by reducing the phenolic load on the body's sulfation capacity. Phenol Assist contains a variety of enzymes to accomplish the cell wall digestion, and other enzymes to assist in the total digestion of fruits, vegetables, grains, and spices. Below is a brief description of the enzymes present: Xylanase makes grains, fruits and vegetables that utilize xylose in their structure more digestible by breaking some of the xylan bonds. CeraCalase™ is a proprietary blend of the National Enzyme Company which aids the breakdown of plant and fruit structures. Cellulase which helps digest the cellulose fibers surrounding plant cells. Beta-Glucanase is an enzyme which breaks down glucan structures in fruits and grains. Phytase breaks organic-phosphate bonds which helps destroy phytins and phytic acid thereby insuring that important minerals are not complexed and transported unused out of the body. Alpha Amylase is an enzyme which helps digest starches and complex sugars present in plants. Glucoamylase aids digestion of polysaccharides and polymeric chains of glucose. Alpha-Galactosidase hydrolyzes bonds that hold galactose thereby freeing the galactose for its enzyme stimulating function involving DPPIV. Suggested Use: One capsule with meals consisting of phenol containing foods. Start with ¼ to ½ capsule and gradually increase this dose to the amount that provides optimal digestion of foods. The dose can be adjusted according to the specific needs of the individual. With small meals or snacks smaller doses may be sufficient to provide adequate digestion of these foods. Avoid mixing with food or beverages that will be heated above 130° F, as the activity of the enzymes will be adversely affected. Directions For Use It is generally recommended that enzyme supplements be taken at the beginning or early on in the meal to assure appropriate digestion. The capsules may be swallowed whole or opened and mixed with food or drink. It is recommended that Phenol Assist be used in conjuction with Kirkman's Phenol Assist Companion. See the individual write-up for that product under enzyme products for details. http://www.kirkmanlabs.com/products/enzyme...enol_bp835.html A chart outlining phenolic and salicylate content of foods follows: VERY HIGH Apricots Berries and Cherries Orange and Tangerine Pineapple Red grapes Tomatoes Peppers Mint Anise (licorice) Olives Dill HIGH TO MODERATE Apples Grapefruit Peach and mangos Watermelon Broccoli and spinach Carrots Lettuce and chinese vegetables (except iceberg/low) Most nuts and seeds Onion LOW TO NEGLIGIBLE Bananas Pears Cabbage Celery Potatoes Fats and Oils Sugars Soy Milk

Hi Jennifer, They didn't give us a primer set of vitamins I read about it, but they didn't give us one. I didn't mind waiting for the test results. How is your child doing on it? Also, pease let me know when they give you the recommended 'program', since we went at the same time, I am very curious as to the timing. Claire

Hi Caz, He didn't give me me info that I didn't post, but he did say that he did a study where he sent ONE enzyme to the people with issues with the fruits and vegies and that the xylonate enzyme came back head and shoulders above. It was unexpected and dealt with fibers. Again, he said Phenol is an end group so that enzymes don't have much to do with it directly. Xylonate is now in no-fenol. He does think it helps, but didn't give %ages. Claire

Nancy, Here is the phone number for Spectracell: 800-227-5227 You don't need a doctor to draw blood, just a lab that is willing to ship out of state to Spectracell. They will do it based on the Spectracell form--my doctor never even signed ours. I supposed you could put your doctor's name on the form if the lab asks. If you call Spectracell, they will give you the number of how to find a lab that will draw blood and mail to them in your town. The lab cost us $50 for the draw. Really, no doctor is needed, but I think it does affect insurance coverage. Pfeiffer uses a different test. From reading what Pfeiffer does, the Spectracell one covers A LOT more vitamins. I will be interested in comparing the two when I get the Pfeiffer test back. Claire

Also, do you use a HEPA filter and sheet protectors for the dustmite allergies? I think a site is www.nationalallergy.com I forgot to mention that my husband, son and I all did the spectracell test and all of us had several deficiencies. We are ALL doing better on the customized supplement program. Nordic Naturals has a molecularly distilled fish oil (meaning no impurities...) in both liquid (orange flavor--really okay taste, good for smoothies), and of course capsules. Claire

Hi Natalie, www.spectracell.com does a great vitamin/antioxidant test for $285 that does not require a doctor's signature. You may need a signature for insurance coverage--not sure. You don't have to wait to move and find a doctor to do this. They give fairly conservative supplement recommendations for deficiencies. Yes, he needs to be off vitamins for 3 days before the pyroluria test. Be sure to cover the speciman with foil and freeze it right away. Claire

I just spoke with Dr. Houston for a long time. I told him I would post the info here, and he said to make sure that I don't quote him making actual claims, given the FDA regulation. So if I unintentionally words things on those lines, note that he is not responsible. My notes...I know no more than this! GENERAL Confirmed all are plant based, even the capsules. Plants have the best enzymes. Enzymes has fungal mechanisms. Like good and bad bacteries, there are good fungus and bad fungus. Aspergillus is good. No fungal matter in these enzymes, they are filtered out. ---NO-FENOL--- Go to Pubmed.com xylanase + phenolic You get papers for textile industry--artificial dyes and colors as poisons in water systems, so they are using Enzymes from same fungal organism as no-fenol. They Break down these complex artificial dyes and colors which are somewhat phenolic. Some undocumented enzyme in no-fenol that is likely working at artificial colors. Informal feedback is that no-fenol helps with artificial additives. This enzyme doesn't break down the phenolic group period, as phenol is an end product. But those same compounds with phenol d have sugar groups attached. His hypothesis is that the no-feno enzymes may remove the sugar groups from Methlyation --how would enzymes affect methylation.? There is not direct effect. However, possibly breaking down foods with the enzymes may make Amino acids more readiliy available for methylation. He says amines are not phenolic, as they have NH2, vs phenol's ring structure. But maybe they've been glycosolated. This is a tag. and thus the enzymes may help. On yeast, he says they can make a better story cuz the cellulase enzyme in no-phenol breaks down celloluse. The yeast coat is cellulose and is hard to break down. The enzyme theoretically would help to compromises the yeast cell. Then, if taken with an anti-fungal such as Nystatin, you could kill the yeast better. Anecdotal feedback from people that no-fenol cause some yeast die-off symptoms, and later testing showed reduced yeast. For yeast treatment, maybe 1/2 cap 2x/day--dosing is imprecise with enzymes. Otherwise no-fenol is taking only when they eat the offending foods. Toxins flush to kidneys/stool. ---ZYNE PRIME enzyme for Carbs and starches--- DesignPrime starches/food, enzymes for carbs, inflammation in GI track. Cell damage, and enzymes in cells. Lactose pulls in water to the gut. But sucrose isn't converted readily to glucose. ZynePrime firms up stools.. Insulin spike follows the Glucose spike. Enzyme seems to be a modulatory effect on glucose. Time release--more gradual better for pancreas. Anecdotal feedback on autistic kids to cut back on insulin. Also, if not broken down, the complex sugars provide more food for the yeast. At each meal. ---Peptizade for proteins, eg gluten and casein--- Should help with Egg protein also. Success rate: Instruction is not to order more if no benefit after 1-2 months. The reorder rate is 70-75%. Majority keep some diet comfortable with infractions. About 30% that abandon restricted gluten/casein diet entirely. More for IgG intolerances than IgE. Claire

Hi Kara, The labs that do the IgG testing are www.elisaact.com and Immunolabs. RAST is IgE--they are different. IgG is the one we did and shows sensitivities vs just allergies. Basically, regardless of which state you live in, you find a lab that will draw blood and mail the blood vials out of state to these labs. I don't think any labs in California actually do the IgG testing. Some environmental medicine doctors will do other food sensitivity allergy testing, but I don't know who and what. You would need to call directly and find out. Claire

Hi Carolyn, You and I have very similar food sensitivities. I too am sensitive to only some of the artificial ingredients, but avoid them all anyway. The BIGGIES are all milk products and the barley. Barley is in almost every packaged product with wheat (crackers, cookies, breads). However, bakeries don't usually use it, fortunately. Like me, you are a good candidate for the enzyme for gluten/casein--the ones that contain DDPIV, (Houston and Klaire make them). Even though we can have wheat, barley has gluten. I did abstinence for a long time and now will test reintroduction with the enzymes. As with the TV situation, with foods I think it is best to eliminate completely to see how you feel, and then test it with alternatives (LCD for TV, enzymes with the foods--or even the rotation diet they recommend). I definitely felt better. Good luck to you with this process. Claire ps If you have questions, you can call Elissact directly and make a phone appointment re your results. I did this and they were great.

Hi Chemar, Ohhhh, that explains it! Thanks Chemar. Claire

I am still waiting to hear back from Houston Nutr. with a number of questions. I called today and they said Dr. Houston would be the one calling back. They did confirm only plant enzymes used though. YEAST Interestingly they said that based on customer feedback--the no-fenol enzyme seemed to help with yeast, (not the other one). Even so, she said I need to hear this from Dr. Houston directly--so I will modify this post if needed. Interesting thought re the phenol ....I have commented before that Ausclare and Caz' Failsafe salicylate/amine list overlapped a lot with the candidias/yeast diet restrictions. (no cheese, chocolate, pears are the only fruit....). So something that helped with those could definitely be a factor with yeast. She also said the carb/fat enzymes help with digestion of carrots and corn. I have a problem with carrots which I love--they give me bad stomach aches, so I can definitely test this directly. Also, I haven't have milk products in almost 6 months since the elisaact test. Well Tuesday I had a frozen yogurt and got bad indigestion. Yesterday I had an icecream and took the AFP peptizide enzyme (sp) and had no reaction at all. Still anecdotal, but I will do lots of testing like this and let you know. Ah yes, for the yeast, in addition to the Threelac Heather mentioned, I am doing the 'oxygenated water' with it, that she also said she used. Little drops you put into your water. Claire

Welcome ntbowen, The TV/computer trigger --if it applies to your child--unfortunately is not always seen during or after viewing. Rather it is cumulative and lingers for days. This is why so many people don't even realize it is a trigger. The easiest way to know is to go a week with no screens at all, as for some reason this is what it takes to clear the system. After that you can experiment with an LCD monitor, a well-lit room, a smaller screen to see what your child can tolerate. Presumably, you could just switch to an LCD screen right away, but depending on your child's sensitivity level (if any), you might not see improvement and it would take longer. How old is your child? This is much easier to do for a week for an elementary or younger child than for a pre-teen/teen. Unless the tics are severe enough that they are motivated to try restrictions. Great that you are seeing results fromt the corn/gluten/milk free diet in terms of stools--shows better nutrient absorption. It may well be that your child also has a reaction to phenols/amines/salicylates (e.g. certain fruits and other related items)/other foods/artificial ingredients. Some combination of an elimination diet and/or IgG test will likely be helpful. The test I took 6 months ago that I recommend is www.elisaact.com Depending on how much you want to spend, they not only test for foods, but for artificial ingredients. We are starting to experiment with enzymes to minimize food restrictions, but are very early in the process. On the other hand, most here just eliminate artificial ingredients altogether anyway. Claire ps I don't know where your story from yesterday is. If you register (confidentiality is still preserved), we can click on your name and check out your child's history. Otherwise it is difficult to find the thread that you posted your story on. Another alternative is to start a new thread.

Interesting Caz. I like the fact that more than one company is following this route--it gives it some credibility, if you know what I mean. I asked our DAN doctor about the no-fenol today. He hadn't heard of it, but he knew of Dr. Houston and his history and said he was comfortable with our trying it. He even thought the carb/fat enzyme was worth trying out. He said he saw no harm from enzymes. He said that the enzymes in general do often help children--possibly for reasons we don't fully understand yet. I will still wait til we do the other for 2 weeks. Claire

Kara, So sorry that you can't find a natural doctor in your area! Did you look at all three doctor lists on the doctor thread here? Glad your son's symptoms are better! Since he flunked the spit test, you might research "Threelac"--a natural over the counter treatment for yeast. Unfortunately no formal studies on it (as with most of this natural stuff), but it supposedly requires the least diet change. Also, the one study that was done showed improvement in allergies--which could benefit your son. Capryllic acid is another over the counter treatment that is supposed to be fine even if you don't have yeast, but both my son and I reacted to it, so tough to recommend it (e.g. nausea) Heather tried Threelac for her child with great success. I am taking it myself, and I have an appointment next week where I want to ask our doctor to have me do a follow-up test. I need formal diagnostic, but I feel it has improved for me. I will post once I find out. It is based on a form of probiotic, so I see little risk. But I am not a doctor so you need to do your own research of course. Also, I have heard a little that enzymes help with yeast and with certain food sensitivities (see Houston Nutriceuticals site). I am trying these now for multiple reasons, and will post the results when we retest. I realize this is two variables at once--enzymes and Threelac. O well. Plus one or two people does not a study make. But our DAN doctor recommends the enzymes based on his reading and experience. Claire

I bumped the one week to fewer tics thread I put together. Also, Chemar, Heather, and Ausclare have started threads on what worked for their children. Truly, the investment in reading as many of the threads as possible will pay off--there are subtleties discussed in all the threads, with each member contributing to the knowledge base. We all have customized our approaches for what worked with our child, though certainly diets, supplements, screen issues, metals/yeast have been common (though not everyone has everything). Just post any questions on the various threads. Claire ps Ausclare, if you are reading this--good for your son for posting. That takes a lot of courage and shows a desire to help.

bumped for Joy Claire

Caz, First of all, perhaps your son doesn't have yeast. I am not trying to lead you on a false path here, however.... My son and I both took not only the CDSA test for yeast which showed negative, but we both ALSO had an IgE test (not IgG) for antibodies for yeast, which showed negative. Then we took the Great Plains urine test showed positive for both of us. I asked our DAN doctor: Why didn't we have antibodies if we have yeast overgrowth? His answer was: Not having antibodies just means you are not ALLERGIC to the yeast, not that you don't have it. This is consistant with the IgG test for Gluten/Casein/Eggs and whatever. You can eat them, but will only show antibodies if you are actually allergic/sensitive to them. Conversely, everyone has some yeast in their bodies, so I suspect you can have antibodies to the yeast even if you don't have an overgrowth--I didn't ask our doctor about this though. In any case, doctors disagree all the time, and candidias itself is controversial. Question: Did you ever try the at home spit test? Did it show negative? (e.g. spitting into a glass of water before you drink or eat anything and the spit floats without stringers? If this is the case, then I would think that would suffice if you don't have the urine test available. Claire

Caz, I sent you a private message--you can click to find it on the top right by "my controls". You can reply without displaying your email or real name. Thanks, Claire