Calicat

Hi Hope, I totally feel your frustration! I felt exactly the same way, especially with the doctors. My first experience with an environmental doc was much the same... very poor bedside manner, little knowledge about tics, and I knew we wouldn't be able to work together. Now I'm on the waiting list for one I hear is much, much better (hmm, maybe that's why she has a waiting list and he didn't). Anyway, about the pill swallowing, for my 5 year old (at the time), I had her put the pill in her mouth and use a straw to sip water to swallow it. I think it makes a big difference because it puts the water and pill right near the throat. It worked immediately for her. Also wanted to mention that I have found lots of relief when my throat is bugging me (itchy or sore), by gargling/swishing with xylitol mouthwash (you can get it at the health food store). It just worked so well for me I thought I'd share. Xylitol is a natural sugar made from birch, I believe, that has strong antibacterial/antiviral properties. Take care, Calicat

Just curious if you stayed off all of the other vitamins throughout this "course" of magnesium. That stood out for me when you said you went off them because you didn't want to overdo things. I think it's possible that skewed results for you. I once made the mistake of taking my daughter off one tiny (so I thought) part of her supplement program--the digestive enzyme. Within a week, her tics started increasing. When I put her back on, they reduced. Apparently it plays an important role for her. As Chemar says, I think the supplements really work together. (Of course this depends on your particular child's needs, but once you figure it out... well, they have a synergistic effect.) I hope you find some answers Calicat

My daughter feels a need to play with my earlobe between two fingers, but mostly if she's tired. And, strangely similarily to your situation, she wants to put her mouth on my earlobe (almost like sucking it), which I pretty much don't let her do (only sometimes she dives in there and gets it for a few seconds). Not sure what's up with this mouth and earlobe thing, but there you go! Actually, I'm sure it's just that my earlobes are strangely irrisistible... my cat and my sister's cat, when they were young, always wanted to snuggle up and suck on my earlobes (I think they missed their mommies). And my daughter tells me my ears "smell good". Hope I'm not making anyone lose their breakfast! Personally, I feel the need to do things fairly evenly on both sides (it's a mild need), so if it stretch one side, I would feel pretty uncomfortable if I don't stretch the other. I know some kids really need pressure to feel calm, so they go under heavy bean-filled blankets for the pressure they provide. I guess I think that it doesn't sound too strange that your son needs/craves a certain feeling/pressure. Maybe he would really like a beany-blanket. Think of the plus side. You get to be super close and snuggly with him, at his request! In ten years, he won't be letting your lips anywhere near his ear Now, about the tic increase question... My first thought is that you just haven't found the ideal supplementation program for him yet. The more I read and learn and observe about this stuff, the more I see the sense in an orthomolecuar approach. Mind you, in the grand scheme of things, I know very little about it. But it just makes sense to me that some of the pathways in the body (like the methylation pathway) could have even just ONE thing that that doesn't function correctly (like one precursor not being able to be converted to the proper neurotransmitter, or what ever. See, I really don't know this stuff cold.) The breakdown could happen anywhere in the pathway. Genetically, the body could be lacking a coenzyme that is needed, or damage could have been done, or whatever. So, it is very difficult for us to know what is needed. Like, is B6 the best choice for my child, or its precursor... what is it... P5P I think??? Well, the answer depends on where the problem happens to be in the child's body. Some people recommend taking both because it will cover both bases. That's just one, not so clearly stated, example. But hopefully you see what I mean. Testing and tweaking might make all the difference in finding the missing link. Good luck! Calicat

Thank you, Kim! That is very helpful! Calicat

C.P., I think you are so right about this. For some of our kids in particular, the obsession aspect could be a problem. I just read an article about kids in Japan being so attached to their cell phones that they literally couldn't function without them. Some talked of not being able to get through the day if they accidentally forgot them; they would cry and fake-sick to go home because they couldn't take it. Also, they told that they often passed "friends" (that the texted with) in the hall without saying a word, but would text them moments later. Their relationship was purely technological. They were not interested in face-to-face, and felt strange doing it. So, I think the problem is so much bigger than obsession. Some children are not learing how to function face to face in a real society. They live much of life in a virtual one. On top of this, it is reinforcing small attention spans, that are only getting smaller. When everything is instant, and flashy, it is so much harder to appreciate the slower moving reality of much of the real world--nature, science, math, literature, and so on. School and work are definitely no place for these devices. Family time should also be given appropriate time device-free. Calicat

Hi, I have not yet done any true elimination type diets, so I may not be of a lot of help here. What we have done: taken out artificial food colours, artificial flavours, many/most preservatives (including the BHT that is in almost every boxed cereal), MSG, aspartame and all other artificial sugars. Basically, this means eating almost no packaged food, although there are a few you can find without the junk. I recently had an experience that convinced me I'm on the right track; I had accidently been given her art. colour and flavour daily (in a yogurt and juice that slipped by my notice). And her winking tic increased significantly. In addition, I aim for as much organic food as possible, in order to avoid the pesticides. I think it all helps. I notice you call your son's food a "routine". One thing I've read about the elimination diets is that you should rotate foods as much as possible. Different meats, grains, veggies, and fruits each day. Apparently it is then less likely that you will gain any new food sensitivities, and also it can reduce sensitivities you already have. I do not have much experience with it, but you could consider looking at reducing phenol-containing foods and oxalates (is this the right word? can't remember...) Anyway, I did some research a while ago when I strongly suspected these subtances because of a MAJOR tic reaction my daughter had to raw rhubarb. You can goolge to find lots of info. Hope this gives you some ideas. Calicat

Hi again Kallik, You're right, I've heard that even "natural" flavours can be a problem for some kids. Seems ok for mine, as she has had this supplement all along since May, and tics have varied from frequent to almost none during that time. But I would prefer it if they made the product without a flavour. I haven't found the definitive answer on the eye winking tic trigger (if there is one), but I did solve part of the mystery... I had mistakenly been giving her TWO products daily for more than a week: pink grapefruit juice with carmine (food colouring from beetles) in it, and Activia yogurt, which somehow slipped past me and has artificial flavour in it. Grrrrrr. Once I realized it and stopped, the winks went down quite a bit. And yet they linger a bit. Mind you, I am not keeping the diet 100% clean. I am doing it mostly in my own house, but not always out of it. Tonight we had dinner with friends and I'm pretty sure the gravy had a gravy mix in it... which would mean MSG. But I didn't want to say anything. And when she is with dad or grandparents, they are not exactly label readers. It's not that they don't care, it's just that I'm not sure they believe in it to the extent that I do. And also they would think label reading is too much work, because they wouldn't understand the different terms, etc. Seperate rant, but I'm having a hard time with that. I feel like I have done SOOOOOO much work in getting my daughter's tics reduced to a decent level, and he (her father) just takes it for granted. And then gives her things she's not supposed to have. He sees it in a simpler way: like, oh, goldfish crackers, well all the kids eat them and they're crackers, not chips, and look! they have real cheese in them, so I guess they're great! I don't think he understands life without processed foods. Anyway, not sure about the magnesium stearate in the Kiddie Cal. I'm on the fence about SISU. Do you have it in the States? I've had sales people tell me it's so top of the line, and yet I have read their ingredients for some products and been disappointed. I'm still searching for just the right calcium product for my girl. Take care, Calicat

Your son sounds like my daughter! (The throat clearing being helped by mag and taurine, and then the eye blinking starting.) Because I couldn't find the mag taurate at any stores here, I ended up getting the mag and taurine seperately, and that worked great, too! I still think it's worth trying the Kids Calm in particular at night for the restless legs, maybe even as an add-on to his regular mag dose... even half a teaspoon to start. I don't know all the ins and outs of calcium, but I do know some forms are quite absorbable, and others, barely at all. My daughter takes SISU Kiddie Cal 250mg, which is cal carbonate and cal citrate. I want to research it more thoroughly at some point. I know that there is an issue of contamination with some form of calcium; hopefully someone out there can chime in with the specifics.

Faith, I am so sorry! I just realized that I read that quote of yours the wrong way... I thought you meant we all received those shots as kids, but now I realize you meant we all had CHICKEN POX as kids, and nobody died. SORRY! I totally agree with you on that one!! Calicat

Carolyn, Thanks for posting this! Just reading through the list gave me some good ideas I hadn't thought of for meals. I am in Canada, and unfortunately we don't have many of the stores and brands that you do (no Trader Joe's... wahhhh!). But the list is still helpful as a guideline and place to get ideas. I will print it out! tlk, I totally feel your frustration about feeding kids, especially what they get when they are out or with other people. Oh well, I do the best I can, and I have to say my little sweetie hardly seems interested in other people's junk anymore! It just usually doesn't appeal to her. I know the feeling; it doesn't appeal to me either, but I think it's pretty good that a six year old feels that way! Anyway, good luck with the food thing. Lately I've been making "freezer meals" once every week or two. I bought the guidelines at "Saving Dinner" (can't remember the exact website at the moment) and it was inexpensive. I LOVE having homemade healthy main courses sitting there ready to thaw when needed... then I just add rice and a vegetable and a salad, or whatever, and we're off! The meals are YUMMY, too! And I'm sure you can adapt for special restrictions, but the recipes are all based on pretty basic stuff... meat and vegetables and herbs, etc. Some I've recently made and tasted are Ginger Beef Stirfry, Two Bean Chili, and Sour Cream Chicken... all very good, and easy to throw together in the evening because all the hard work of chopping and assembling is already done! I just wanted to share this because I went through a lot of frustration with meal planning, and now I just love that the shopping list and prep list is all printed out for me, and it's not hard to make substitutions if needed. Take care, Calicat

Hi Faith, Yes, that is correct, my daughter has never had the MMR. When she was born, I decided based on reading I had done to at the very least POSTPONE her shots, and get only the very basic ones, not all the new add-ons. But the two doctors I tried seemed to have absolutely no clue on how to find the single doses of M and M and R. Yeesh. If they don't know, who's gonna know?! And yes, my sister is a doctor, but at this point is still a resident, and was just a med school student when I was sorting out this shot thing a few years ago. At any rate, she believes what she learned in med school... that it's simply the thing to do. We've had a couple mild arguments about it, and she says that it's a simple thing... a tiny amount of virus encouraging the body to make antibodies... and she doesn't see how there could be any ill effects from that. It's like she doesn't even recognise how a bunch at once could compomise the body's ability to handle it, or how a too-young baby might not have the immune system right off the bat to deal effectively with it, or how it's grown on disgusting things like monkey tissue that can contaminate it, or how the preservatives (mercury and now aluminum) just MIGHT be too much metal for a little body to handle and get rid of. I do not bring it up with her anymore. I did want to comment on something you said: "I say big deal, my generation all had that as a child, nobody died." I think that probably some did die, actually. Hard to say exactly, as the adverse events reporting has been a bit of a hoopla. But aside from actual deaths, there has definitely been damage to some kids. And aside from that, I think it was a different kettle of fish at the time. I can't remember the numbers, but I think kids now who follow the total schedule get something like 3 or 4 TIMES the amount we received as kids (I'm guessing here, but I'm assuming the generation you mean is approximately people born in the 70's). THAT may be one of the biggest problems now... it's just too much. But there is SOOO much money to be made in developing new vaccines! Calicat

Hi Kallik, I take magnesium for my restless legs and sleep issues. I find it doesn't take much to help, and I'm a full grown regular weight adult. I think I take about 250mg (hard to say for sure; it's a powder). One thing to look into is absorbability. I think that mag citrate is one of the most absorbable forms. I read somewhere that the guy who developed Kids Calm (which is my mag supp.) figured out a better "delivery system" by having a mag citrate that is dissolveable in hot water; apparently it gets into your body faster and is absorbed more this way. All I know is that this particular product, with it's particular type of mag (citrate), works for me. As for calcium, I believe a 2:1 ratio (cal to mag) is pretty standard BUT I also hear that 1:1 is probably sufficient if you take into accout dietary calcium. Hope this helps. Calicat

EASY FIX!!! That is the most ridiculous thing I've ever heard. Nothing we are doing here at this site is EASY. It all requires a lot of individual research, constant note-taking, the observation prowess of a detective, a willingness to try and fail, and tons of perserverance. There is nothing easy about it! And all of the possibilities for triggers, deficiencies, viruses, etc, etc... For all their intelligence, doctors sure seem to simplify issues and keep their minds closed, don't they (and my sister is a doctor...). And then there's the whole "well, the benefits outweigh the risks" statement. That statement is regarding the population AS A WHOLE, not your individual child. If your child has a genetic history or predisposition of some kind, the risk could ABSOLUTELY not be worth it. But doctors don't have much to say about it, do they? They just parrot the simple line they were taught in medical school... In my case, I don't believe vaccination had anything to do with it, but I feel further vaccination would be a risk I'm not sure I'm willing to take. My daughter (6) had her DTaP at age 3. No vacs before that. No MMR, because I couldn't find a doc to split them into three doses. FRUSTRATING. Oh well, maybe it's best under the circumstances that she didn't have the MMR. No chicken pox or any other vac. Anyway, just had to vent about the doctor thing. I know there are some good ones out there, but it bugs me so much that we put them on this big pedestal, but really, they are not all-knowing gods. You know how we're always told to "check with your doctor before starting any nutritional or exercise program"... give me a break! All they'll tell you is to follow the food guide and other BASIC stuff. I think it's the same with vaccinations; they just give the quick and easy answer that ensures the general population is protected, not your individual child. Ok, I'm majorly rambling tonight. Hope some of it makes sense Calicat

Thanks! These look great! Calicat

Hi, Thanks for the great tip! Currently I mostly use Nature Clean in my house, which I love. This sounds like a great addition. I can't wait to get into the gardening, too. I have always done organic (but it's always been very small). It runs in the family. My grandpa's and parents' gardens were always organic, too... ahead of their time! Last year I also signed up for Community Supported Agriculture at an organic farm, so that gave me lots through the summer.

Hi, About the food colouring question, as far as I know, the cheap stuff and fancy Wilton stuff are likely equally bad. They are mostly tar-derived colours... very chemical. Almost every product on the shelves with added colour uses the crappy stuff. If you want to search for natural colours it is much harder to find. Health food stores to tend to carry food with natural colours (derived from seeds, fruits, vegetables, and so on, such as tumeric, beet, etc.) I recently bought special food colouring made this way, and also some decorator sugars for cookies. Haven't yet tried the colouring, but we made cookies the other night and used the coloured sugars. They were a bit muted compared with the bad stuff, but I found them beautiful! And it was great to be able to let me daughter actually decorate cookies with colour again. I ordered these through an online natural candy store... can't think of the name at this minute. Hope this helps. Calicat

I have had "sleep stuff" going on for most of my life. As a child, I would get up and do odd things sometimes, like run up the stairs, take my hamster out of its cage, etc. At some point, I'd wake up and think, "What in the world am I doing?!" I suffered from nightmares most of my life, from childhood up until recently. Really bad and frequent nightmares. Also, what I call "night visions"... sort of like hallucinations. Basically, I wake up in the middle of the night, or rather THINK I've woken up, and I see things in my room. It is not like a dream because my eyes are open and I can see my whole room. I see things like wine glasses dancing across the ceiling, objects moving up the wall, and there's this orange spider (sometimes black) that "visits" me quite often, and I'm absolutely convinced it's really there on my wall, and then it runs to hide behind a picture or something. I have had restless leg syndrome here and there since I've been a teenager, I think. It was especially bad during pregnancy. Also bad if I'm overtired and stay up late at the computer or on the couch. A few years ago, I started having trouble falling asleep, and then I'd wake repeatedly in the night for sometimes a minute, sometimes much longer. I am the sleep issue poster child, aren't I??! As for my six-year-old, we noticed from the start that she was not easy to get to sleep. She'd be soooo tired, but I'd still have to bounce her for half an hour to get her to drop off. Mind you, once asleep she did pretty good. She did have some night terrors. Also, by the time she was 3 or 4, she had trouble falling asleep and would lay there for sometimes an hour. (Meanwhile, my friends are like, "Oh, mine goes to sleep 2 minutes after her head touches the pillow." ARRRRGGGH. Anyway, I know I've said this before, but the ONE thing that reduced all of both of our symptoms to a minimum... is Magnesium. Specifically, Kids Calm. She falls asleep normally, my RLS doesn't bother me, I rarely have nightmares or night visions, I stay asleep better... Honestly, if we forget to take it for some reason, I notice poor sleeps for both of us. I find it interesting that this has helped us so much, and yet I've never seen it recommended in a sleep or RLS article. I do want to say, though, that we have been on it for a number of months, and it seems *slightly* less effective than before for me. I'm curious if this means I need to up the dose. Hope this helps for someone. Calicat

Hi guys, My daughter (6) had been doing sooooo well, with only the odd tic here and there. Past few days... they're coming back. Mostly a LOT of in and out sniffing, some throat clearing, the odd wink. My questions are: This is the first week at school since two weeks off, and I just found out a friend at school is sharing her coloured fruit gum thingies and chocolate treats with her at school, daily... could this be a reaction that has built up over the week? It's still getting stronger each day. We started drinking pink grapefruit juice daily this week, and I just noticed tonight that it has carmine in it (the red colouring made from boiling up a bunch of special dead beetles). Anyone else had a problem with this, or is it probably not where the reaction is coming from? To add to the fun (troubles), we had tacos last night, with that crappy taco seasoning mix. Not buying that again! Could that be increasing the reaction? I'm going to TRY to keep her diet cleaner for a few days and see if there's a reduction. How long do you think before the system would clear, so I'd know if the colours/MSG were the problem or not? She does seem to be able to have small amounts of this stuff, sometimes, without a problem. Do you think it's likely that this is a situation of too much crap just building up? IF the cleaner diet doesn't help, does anyone have a suggestion on which supplement might help specifically with a sniffing tic? I'm getting scared now because we're coming closer and closer to May, which would make it one year of tics, although they have been extremely mild for much of that. Would that make a Tourette's diagnosis likely? I guess I'm asking, if the tics are extremely mild most of the time, even if you have them for more than a year, could that be Tourette's? As I've mentioned before, my sister and possibly mother seem to suffer from a bit of mild OCD, even though it doesn't affect much and has never been diagnosed. Does that make a true Tourette's diagnosis in my daughter seem likely? Please let me know any thoughts you have on these things, especially the Tourette's diagnosis issues. Thanks in advance, Calicat

I do not know enough about natural flavours, but I do remember someone posting here that SOMETIMES natural flavours can contain small amounts of a form of MSG, which lots of our kids do not seem to tolerate. I find the colour is definitely a no go. (Actually I just ordered some naturally coloured decorator sugars for cookies, which should be here any day. I'm so excited to be able to say YES!! you can eat that coloured cookie. The colours come from beets, tumeric, etc. I'm also getting natural liquid food colours.)

Hi, I have a Hepa air filter; I personally put it in my kitchen to be somewhat central, but also because I have experienced my own worst allergies in the kitchen. I do not know if my daughter has allergies that manifest as tics, but her tics are absolutely minimal now. I believe it is more the supplement therapy than the filter, but the filter helps me and I'm sure it all works together for good for her, too. If I get another air filter, it will go in her bedroom. Also, I do have one of the more expensive furnace filters which is a Hepa as well. We went to a traditional allergist about a year and a half ago. My daughter tested allergy free. However, I personally had my own suspicions about her being sensitive to mold and possibly some food, such as chocolate and artificial ingredients. If she gets any amount of chocolate, she will have nightmares or night terrors that night. Artificial ingredients make her act a little "weird"--stuff a parent definitely notices. She's not herself, she's a bit hyper, a bit pushy/jumpy/rough, I hardly even know how to explain it. Also, the tics kick in more. Anyway, a traditional allergist will not test for that stuff. Also, there is a difference between traditional allergies and delayed allergies... I believe the delayed ones need to be tested with a blood test, not a prick test. Hope this helps a bit. Calicat

Hi Airbucket, I really feel for you. I had SUCH a disappointing appointment with the first environmental doctor we got in to see, that I almost cried. I'm now on a waiting list for one I know is better (well, my friend sees her and says she's very good, anyway). But there is something so frustrating about waiting and hoping and counting on a professional, and then they just completely disappoint. Hope it goes better with the DAN doc! Calicat

Welcome Peggy! This website has been the #1 best thing I have found on the internet. Before I found it, I would sit at the computer searching desperately for shreds of information and crying. Now it feels a bit like family. Bad day? Post here and cry on people's shoulders, and get some advice, and pick yourself up and start on the next step. Good day? Post here and people will share in your victories. I personally have not tried Bonnie's supps. One of the reasons I decided to build my daughter's supplement list on my own (with the help of this forum) is that I wanted a sense of control and taking it step by step. Then, if something was helping or not helping, I could adjust. On the other side of the issue, when you are overwhelmed, maybe it would be helpful not to have to think about all those individual supplements. Lots of people suggest keeping a food journal, which is helpful. Personally I like to keep a notebook, and I write down all kinds of tidbits of information I come across, so it is handy and all in one place. I second the vote for an environmental doctor. I am on a waiting list for one right now, and should be in by late spring 2008. When I first came here, it was overwhelming but also gave such relief to find the type of info I was looking for. I highly recommend reading through the pages of this forum, or at least all the topics in the "essential threads" post. Every child is different, and what causes problems for one might not for another. For diet, I think taking away all artificial ingredients is a good thing. It is challenging enough, and not good for any of us anyway. Best of luck to you in this journey. Calicat

Super information, Kim! Thank you! I agree with Faith that anyone who has the ability to summarize information that is so technical and thick, can feel welcome to do so! I know it is a struggle to understand some of those terms. I was interested to read that all sulfate in the liver can be gone within a minute or two. I remember posting a long time ago with a question regarding mealtime tics... why did they come on SOOO quickly when a meal started? Maybe this is part of it? Also, my daughter gets nightmares/night terrors every time she eats chocolate. It really has a strong effect on her. Some food colours or flavours (hard to tell which ones) also made her behaviour change very quickly. It might be subtle to someone else, but I have always been able to walk in, observe her for a minute, and say, "OK, now who gave her candy, because I know SOMEONE did!!" She also complains of stomach aches regularily, and so did I as a kid, and I notice that section about secretin etc., and wonder about the link. Strong smells, mainly of a chemical nature such as perfumes and room "fresheners", can give me an instant headache... not pain exactly, but a heavy, throbbing dizziness. And the article said that strong odors can inhibit PST. Curious about that. I consider my chemical sensitivity to have gotten much worse in recent years. Oh, how I wish there was a simple way to measure this stuff in ourselves and our kids, and start getting some real answers! I'd love to be able to say to someone, "I'm sorry, she can't have that junk because it inhibits her PST, which is very serious for her," rather than, "Uhh, um... no she's not exactly allergic... what then? Yes, um... just not good for her." If there is a PST/sulfate impairment/deficiency in my kid, that might explain why she seems to need to take a multi-enzyme each day (when I stopped it a while back, tics came back, but I couldn't figure out why, because she hadn't been taking them with every meal anyway, but didn't seem to have a problem.) Maybe the enzyme is required for vitamin uptake? She does always take it at the same time as her other vits. She is pretty stable again now, with only the odd vocal here and there on some days, and maybe a wink once in a blue moon. Whaddya say we all pitch in some money and build ourselves a research lab and start testing out our theories!! A group of dedicated moms and dads can change the world! Calicat

Just curious... Is there any problem with stainless steel? I thought it was pretty inert. I have my daughter now drinking out of a stainless steel water bottle daily to avoid plastic water bottles. Any thoughts? Calicat P.S. There is also stoneware for the oven which is great stuff, and even clay bakers. Slow cookers usually have a ceramic insert, which is good. I have been thinking about cookware issues myself. For me, I am trying to replace any nonstick cookware with stainless steel, glass, ceramic, cast iron, and stoneware. Of course, trying to avoid all aluminum cookware. I'm also avoiding plastic more and more.

Hi Kim! I LOVE how this forum allows all these stories to be shared and connections to be made. It may not be highly scientific, but I think it's a good way to develop working theories. I was very interested to hear that RLS is almost an opposite to TS as far as dopamine is concerned. Maybe that's not the genetic link in my family, after all. I really find it interesting that a simple supplement has helped me so much, as if my body was crying out for magnesium. I wonder if it would have made a difference for me during my third trimester? Thanks again for all the research you do. PLEASE post any thoughts/connections you come up with. Calicat