Claire

I have never heard of that Kimberly. Only that B12/folate was not great for undermethylated people--and that came from Pfeiffer. Yet they 'prescribed' it for your and Nancy's children. Go figure! We do B12 with no issues. I think this undermethylation is very common in this group. Please let us know if you notice improvement or not with the treatment. Claire

Mercola just did something on teflon coatings... http://www.mercola.com/2004/oct/23/teflon.htm Look what he said on stainless steel! "Further, I recommend avoiding stainless steel because of the potential aluminum toxicity that has been linked to Alzheimer's disease. Although aluminum pots are probably less problematic than other sources of aluminum like drinking water and antiperspirants, I personally would not use aluminum cookware." Claire

Susanna, By the way, zinc is critical in keeping infections down. Does your son have white spots on his fingernails? This is just one indicator of a zinc deficiency. This is independent of treating strep properly, but it could make him less susceptible. I am speaking of zinc capsules (best taken at bedtime). This is different from a zinc lozenge the first day of a cold. Claire ps Ronna--great input on this for Susanna to test even without classic symptoms!

Kara, Yes that is the same spit test. My yeast is so bad that it sinks/has stringers within 5 seconds. I have never had to wait. I do it into a glass, and it must be first thing in the morning before you drink water or eat. Claire

Hi Renee, Yes, I love that site! I had read about the manganese and asked them about it. They said since my son's trigger was only screens it wasn't a normal tic syndrome (remember he doesn't have any now), so manganese was okay. Basically their view seemed to be If TS, don't use it. Most here are in between---she seemed to feel that if you use manganese watch closely for tics or worsening. Good luck finding the right doctor. I don't believe in 'perfect' doctors--we still need to do our research. But ours was a godsend. Look at this site--the vast majority who have been searching have gained improvement. Claire

Corn-Free Baking Powder: Makes 1 2/3 cups 1/3 cup of baking soda 2/3 cup of cream of tartar 2/3 cup arrowroot starch Blend all ingredients together. Use in recipes calling for standard baking powder. I filled a normal baking powder tin with this, so it is very easy to use. They say to keep it in the freezer (it doesn't freeze). My favorite recipe book: AiA gluten and dairy-free cookbook (AIA = autism international association or something) It doesn't do the salicylates/amines, but it does: corn, milk, cheese, wheat/gluten, egg soy free alternatives. They basically have substittion choices for those. For example, we do use the soy. Here is a cookie recipe I modified quite a bit from the recipe book. I wanted less sugar and more protein. For my son--it was sweet enough to work. Less protein powder, more sugar if you want it closer to the original. Butterscotch cookies GF flour mix: 1C brown rice or white rice flour 1/4 C potato starch flour 1/4 C tapioca flour Makes 1.5 C gf flour mix. Save the extra 1 1/4 C gf flour mix ½ C vanilla rice protein powder 1 tsp baking powder –(can use corn-free) 1.5 tsp xantham gum (xantham gum is fermented in corn! aargh. can substitute with guar gum --but it is fibrous and gives a bit of a 'gas' reaction, so I use the xanthum gum) 5 oz Dairy-free margarine (we love ours, but it has soy in it) 1 C dark brown sugar 1 tsp vanilla ½ C pear puree (I use canned pears and puree myself without the juice) Mix dry ingredients above Mix remaining ingredients. I used my hands to blend—turns out like peanut butter cookie consistency. Cookies, check after 9 minutes at 350 degrees. (we have a convection-bake oven so it may bake faster than yours) Fried rice is good now that he can have egg occasionally. But without the egg--I never got it to taste right! Claire

No way. Good for us to know! And good for you for pushing this! Claire ps, Glad I deferred to Ronnas on symptoms! After she posted I remember a friend's kids with strep, with no symptoms but a rash that disappeared.

Yes, the two are very different (IgG -delay reaction and IgE--immediate reaction). Most of the neurological reactions seem to be to IgG which doesn't get picked up by the IgE (immediate reaction). I recommend the Elisaact.com IgG test. You can choose as broader or narrow testing as you like. Yes they test for a ton of foods, including all you mention. Additionally, they can test for many artificial colors and preservatives. They don't test for salicylate or amines by category, but they test for the individual ones. My son had a number of specific amines/salicylates show up. In addition to testing for rye, barley, wheat, and milk, they also test for casein. You need to look at the form and pick the ones you want--then call them for the cheapest grouping. So glad you are not doing the steroid nose spray any more. You might consider the Great Plains organic profile urine test for candidas albicans (yeast!) at some point. Our doctor ran all of these--yeast impacts food sensitivities and visa versa. You need to address both for a time to heal the gut. Claire

Hi Diane, Thanks. Boy that Gameboy is so prevalent. That's why I think it is the motion as well as the CRT screen--Gameboys have LCD screens now--though I don't know if they used to. I know that with photosensitive epilepsy they discuss not just flicker but graphics and their movement, and I am convinced it is the same trigger. I wonder so often about that addictiveness--I don't think it is just our kids that latch on so much (though I think they do...thus for young kids I would avoid it totally because I think it is easier to do no video games than to restrict the time--with older kids it is a tougher balance) ...look at this statistic I just found today--it carries over to adulthood. This is a real bummer to me. http://www.cnn.com/2004/TECH/fun.games/10/...s.ap/index.html TV viewership among men aged 18 to 34 declined by about 12 percent last year while that group spent 20 percent more time on games, according to Nielsen Media Research. Video games now attract not just hard-core gamers, but people of all ages and more women than ever. In the United States, overall sales reached $10.7 billion last year -- more than movie box-office receipts -- and is expected to reach nearly $16.9 billion in 2008, according to market research firm DFC Intelligence. -------------------- Good to keep in mind about violent movies. They are very stimulating and graphical. My son never had that reaction to a book. Claire

Hi Heather, I am not sure how I missed that post of yours--I thought I read them all. Since my son didn't have PANDAS maybe this is why he doesn't react. He only takes them for 3 days or so at the onset. They do have zinc losenges without echinacea at whole foods. Claire

The zinc lozenges in the studies were given the first day of symptoms. Same with echinacea. I honestly don't know if they would help or not at this point, sorry! Others? I can't see them hurting, but it could be a waste of time. Generally strep is not accompanied by cold symptoms. If no sore throat (or fever) I wouldn't worry. Claire Edited 10-24 I just read Ronna's post and will defer to her on symptoms.

Some people have problems with glucose/fructose, others don't. If a child has elevated yeast, sugar feeds the yeast, so you would want to minimize it. But if the cereal is not a sugary cereal, a little bit is still fine. Fructose is a refined fruit sugar--like white bread vs wheat bread. It is so concentrated that it can set off insulin/yeast reactions just like sugar. It may be that the Failsafe diet allows none at all--I will let those folks answer from that viewpoint. Many of us follow different plans so the answers will vary. Feingold is okay with some sugar. On the other hand, artificial sweeteners and high fructose corn syrup are more of an issue for more people. You need to find a diet that is liveable. I personally don't sweat a little of things. Though if your child is actually sensitive to it, then a little bit can be a problem. My son and I both can't have corn sugars at all, but fructose and glucose aren't an issue. But our reaction isn't tics (I don't even know what my reaction is!) To me, standard granola bars are a joke in the pretense that they are healthier than other treats--purely marketing. I look at overall sugar content and other than holidays/birthdays, we keep it low. Claire

Yes I recommend getting tested. My DAN doctor thinks the spit test actually has fewer false negatives than the GDSA stool test--since yeast clumps in stool and you can miss it in the sample. Phyl and I both used the Great Plains Organic Acid profile test. I love this test as they check for glutathione levels also. Here is the site (doctor's sign needed for at home urine test that you mail in) http://www.greatplainslaboratory.com/ This describes what the analyze http://www.greatplainslaboratory.com/test1comp2.html Claire

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My own candidias was from antibiotic use over 20 years ago! The spit/saliva test can be done at home. Great Plains has a urine test. I am out for the evening now--will post tomorrow.

How often is 'not that often'? Ever 4 times in one year? Or 6 times in 2 years--I forget the exact number. Somewhere on-line there is a 'test' for things that might lead to candidias. But I think those are the main things. I don't know the other medicines, perhaps others do. I know others here know a lot about this. Claire

steroid and frequent use of anti-biotics. Hormones (the pill) too. From there, sugar, refined carbs feed it. Plus some theorize that elevated mercury suppresses the immune system and leaves the gut vulnerable.

My son had both issues also. Melatonin stopped this in its tracks (after 10 years of issues consistently). .25 mg a night dissolved in water--the studies showed 6 grams, or 25 times as much!. Now he no longer needs the melatonin. I think his better cal/mag and zinc all made a difference. All were just at or above the normal daily dose. Do you resist taking the normal recommended allowances of supplements also? Since you are an adult, I see less concern with trying melatonin if zinc alone doesn't work. I cannot tell you how much I personally appreciate the good night's sleep I am getting after 20 years of disturbed sleep. Claire

Does protein impact growth? My son avoids protein... If this is true, I might be able to influence this. I knew it affected muscles. Claire

Scott, I do zinc at night. 15 mg is the normal adult dose (in a multivitamin). I take 25 an hour before bed--no megadose and it cured my sleep disturbances. However, I started with 50 mg for the first week and saw results within 2-3 days. Then after a week I dropped to 25 mg and it does the trick. I don't like megadosing long term. Do you have white spots on your fingernails? This can indicate a deficiency. Melatonin--even just .25 mg--30 minutes before bed will put me right to sleep on the rare times that I drink decaf (I never have caffeine--haven't in about 15 years). I probably use this only once a month. I read that if you are deficient in melatonin, that even .33 mg will put you to sleep because that is about what the body makes naturally and you are replacing it. I also sleep in a dark room now. Is your problem just getting to sleep, or do you wake up in the middle of the night? My problem was middle of night wakings. Claire

I don't think Feingold does amines, but other than that, it 'sounds' (not sure) virtually identical to Failsafe-- both say no artif. ingredients and salicylates. And both claim help for ADHD. Now Feingold recently mentioned tic syndromes also. Feingold is very close to Great Plains, and once raised yeast with me in an email exchange. I never use the Feingold list. Due to our wheat/milk/egg restriction--my son would be malnourished with their list. So we shop at Whole Foods and read labels heavily. My son tested IgG sensitive to bananas and sesame. We had introduced the bananas weekly, but with all this talk, I stopped buying them again. He is so used to not having them he doesn't notice. I never knew sesame was on the list too. It is odd how many things he tested sensitive to that are on the amine/salicylate list. However, he didn't seem to be sensitive to all of them. Many of his sensitivities turn out to be on the salicylate/amine list, which is very interesting to me after reading what Ausclare/Caz and Marina say about Failsafe: bananas, cranberries, apples, almonds, sesame, corn and of course wheat/quinoa/rye, peanuts, and milk/eggs (and casein, meaning no cheese). We now rotate in just the corn, almonds He does get some apple occasionally in jam, but we never added in apples. Life is so much easier with the almonds (protein source) and corn (flavor and texture like wheat). He rarely gets much tomato anyway. I have noticed that I am not encouraging foods in the salicylate group after reading all the forum comments. Except I encourage berries occasionally due to the antioxidants. He needs this for his high mercury. I have never noticed a reaction to strawberries. So I just don't think that all salicylates/amines bother him. I wish we had more evidence on how well IgG picks up the amines/salicylates that kids are sensitive too. I agree that trial and error is best Is Failsafe particularly big in Australia? Claire

Thanks Caz, you are always so informed. One thing that many of these concepts have in common: Elimination until you find a baseline, then reintroduce/test to see what the trigger is. This is really the way to go. It sounds like a very systematic process. The comment on fermentation avoidance meshes with diets to eliminate yeast overgrowth too. In fact I wonder if this is related to the success. Also, for yeast elimination, pears are basically the only fruit allowed--the yeast don't feed of it for some reason. So this was my son's only fruit for many months (I would give him diluted grapefruit juice occasionally). Now I add strawberries because of the natural antioxidants. Though they aren't good for yeast. Our individual food allergies make this whole process so much more of a challenge. Corn was a problem for my son. He went without it for 5 months and now we rotate. He seems to be okay with it now. Because corn syrup is in so many things, and corn flour replaces wheat in most things. And he is allergic to wheat and milk. Susanna's child can't have white potatoes, and someone else's here can't have rice. A number here are allergic to soy or milk or eggs. Whatever the diet plan, I sure hope that healing the gut means that the restrictions can be loosened. This is the whole IgG approach. Avoidance for a time, then rotate it in. It seems to work for us, except of course you must test it. My son still can't take wheat. I am afraid to try peanuts due to the stories. I really want to get him retested for the others (it has been 7 months), but our doctor is hesitant to draw blood so often--I understand, but I would feel better about him eating them now if I had this info. Claire ps How did you find this Latitudes site by the way? We are sure glad to have you here.

Lulugirl, I saw a comic once with two doors with OCD and the devil holding them open. They read: "Darned" if you do, "Darned" if you don't. But not those words. My nephew has/had it--it has greatly improved since puberty, flax seed oil and lower carbs. The drug (Paxil?) didn't work for him. It IS hard, but apparently you can actually change your brain chemisty by breaking the habits--it does get easier over time. But to me, especially when combined with TS, as Chemar says, it is highly complex. It would be nice to reduce the urges in the first place. Scott, are you trying any of the things on this board to see if they help you? I have no idea what relief they might offer an adult. However, I know that the vitamin deficiency test and subsequent supplements that my husband and I both took helped us feel better in general. And my sleep is no longer disturbed as it was. Since yours got worse later in life, I wonder about mercury or other metals...If you show low antioxidants on the Spectracell test, it might indicate metals are high. I have a friend who eliminated certain foods and their obsessive thoughts virtually disappeared. I think it could be worth trying some of the same things for tics. Again, DAN doctors general help OCD without drugs. But Chemar is right, combining drugs and supplements needs professional supervision. Claire

Lulu, That is awesome!! When my son's tics first went away, he would tic again at the mere suggestion. But over time, this stopped too. I am so happy for you and your son. Wow. Claire

Scott, OCD or ADHD are COMMONLY comorbid with Tourettes. I have read from 30% to 50% of the time. Impulse control. Good luck with your situation--I think you tried some of the supplements that Chemar recommended for OCD? They made a difference for her son. I hope you and your friend can talk it out and you let her know that it just takes you longer but you are motivated to get there. You need those positive relationships in your life. Claire