Calicat

Hey mblack, You're in the right place! My 5 year old daughter started her second episode of tics only 6 weeks ago (throat clearing and sniffing mostly, a little eye blinking). It was up to around 30 tics a minute at some points. She has been steadily decreasing over the past few weeks, and it is MUCH less noticable now. What I did is: 1. I read through as many posts as I could, and took notes on the things that struck me as important, especially little details that I would likely forget, with an eye toward things that struck me in my daughters situation (such as specific symptoms, etc.). 2. I read Sheila's book... can't remember the exact name, but I think it's Breakthrough Discoveries in Natural Treatments for Tics and Tourettes. 3. I implemented some basic supplements... an additive free multivitamin, magnesium citrate, and multi digestive enzymes with probiotics. 4. I cut out all artificial additives, including artificial flavours, colours, and sugars, as well as chemical preservatives. 5. I started her on NUCCA chiropractic treatments (1 so far), which focuses on the top of the spine and is very gentle. Next, I will be seeing an environmental doctor and getting some testing done, hopefully for viruses, nutrient deficiencies, food sensitivities, and heavy metals. Whether she is better or not by the time that appointment comes up, I think those tests give really important information to guide our future path. Of course, I'm not suggesting you follow the same plan as me, but maybe it will give you an idea. As for some of your questions, lots of people here have gone to a neurologist, but I didn't bother. It seems they offer medications and not a lot else as a general rule. As for an allergy specialist... personally, I'd opt for an environmenal doctor, which does deal with underlying allergies and is open to integrative treatments. From my understanding of reading many MANY posts over the past few weeks since I joined, I've found each tic/TS situation is quite different and responds to different therapies, depending on what the child's underlying issues are... these can be any combination of allergies, food intolerances, genes, triggers, illness including strept, etc. That is why testing is so important. If you know a child has a zinc deficiency, for example, you won't be stabbing in the dark with a variety of supplements. Dairy may not be an issue at all for YOUR child, which is why it may not be working. Magnesium seems to be pretty good across the board, but is not an answer all by itself. Check out PANDAS information-- strept infection can trigger tics. Also, although less discussed, PITANDS, which is a more general thing... illness triggering tics. My best advice so far: go slowly with changes so you can track what's working and not, but also give things a bit of time to work (days to weeks). And have hope... many here have had great success! Peace, Calicat

http://www.latitudes.org/forums/index.php?showtopic=1053 detailed info from Ronnas on strep titer testing

http://www.latitudes.org/forums/index.php?showtopic=1564 lots of info and links on vaccination issues that people may wish to research with regards to children with neurological issues

Oops... when I started writing this answer YESTERDAY, no one else had replied yet... then I left my house for the rest of yesterday and all of today and only just got back to the computer now to hit "add reply"... so if it sounds weird or repetitive or like I didn't read any of the other replies, that's why! Hope it helps anyway... Calicat

If it was me, I'd think outside the box... the breakfast box, that is. People eat different things for breakfast all around the world, so why not us? How about a thick slice of turkey breast instead of the bacon or sausage? Steak and eggs is somewhat traditional. A chicken or turkey club sandwich? Maybe an omelet with white chicken chunks, salsa, and white cheddar. Ham and pineapple and homemade potato hash browns... I don't know exactly what your analysis showed was needed for diet, but I would not rule out carbohydrates. High fibre carbs keep blood sugar levels from spiking and falling quickly. Diets that attempt to be carb-free result in the body going into ketosis, which is not something you want happening in a growing child. Chances are, you know all this already, but I just wanted to emphasize that high-protein is NOT equivalent to low-carb. Hope this helps... Calicat

Hi all, Quick update: my daughter's tic level has continued to stay moderately low... hooray! As for me, I feel somewhat addicted/obsessed about figuring this whole thing out (not that I let her see that part). I'm putting together a "health team" right now... starting consultations and doing "interviews"... I've found a NUCCA chiropractor, a naturopath, an environmental doctor, and I'm working on a regular doc too, since that is something we don't have and the environmental doc requires it. So I'm slowly getting things together. About the water dispenser: We have well water here that concerns me, so we drink bottled water, but I'd like to get a dispenser for those big bottles so I can have more on hand to use for cooking, etc. Doris Rapp (Is this Your Child's World?) suggests a dispenser with no internal plastic parts for the water to sit in/go through. I checked out some "water crocks" online (you can google it), and found these ceramic water dispensers, lead free of course. Some were even plain, unglazed terra cotta, and they claimed that those would lower the water temp by about 10 degrees over your indoor house temperature, due to slight evaporation through the crock. This sounds good to me, but I wonder about a couple of things. First, would any mold or slime grow on the inside of such a crock? Is unglazed terra cotta completely safe? There were also a couple of freestanding metal or ceramic water purifiers that rely on gravity to force water from the top chamber through filters into the lower chamber (I suppose a bit like a giant Brita). What do you think of this? Would it remove enough out of the well water? Thanks, Calicat

Hi Kim, I'd be very interested in reading the threads and other info you have on this topic (Kynurenine, quinolinic acid, etc.). Could you send me the links? Thanks very much!! Calicat

Well, I knew I'd get lots of good ideas about this from all of you. Thanks for responding. I think I can rule out the idea of anxiety/nervousness about ticcing or being watched, mostly because my daughter has no idea that she tics. She has two main tics--throat clearing and sniffing (and a tiny bit of blinking, teeth grinding... I think that's it). So, to her, she's just suffering allergies or a cold or something like that. It's only been going on for a month or so, and I've never used the word tic with her, nor tried to explain it that way. She wouldn't find it nerve-wracking to clear her throat or sniff, as she hears me sniff and sneeze plenty when I'm dealing with my own (classical) allergies. And I never bug her about it. On top of that, much of the time it is just the two of us at the table, so there aren't even those extra pairs of eyes. Lastly, she's only 5 years old, so she's not tuned into that kind of stuff. I also don't require her to be quiet at the table. (But I can totally see how anxiety would play a role if she knew she was ticcing.) Patty, that's a great idea to use the excuse of allergies for avoiding certain foods/situations. I'm going to do that with my daughter as well. As for excitement... now, if I was serving a pecan log with a side of marzipan for supper, and a plate of candy for dessert, I could see her getting excited. Unfortuneately, meals are quite healthy and quite boring. I, myself, am a passionate food lover. My daughter is not quite there yet. She does, however, love vegetables, thank goodness! The amino acids having an effect on neurotransmitters, and the metabolism playing a role... those might fit the bill in this case. It certainly is something that has an effect quickly. Powerofprayer, I have to say you made me laugh out loud! Maybe what you experience is similar for my daughter, and it's an association thing. C.P., it seems you've experienced an "assosiation" type of thing, too. And when you mention your son going nuts with the fish oil right away, that seems similar (kind of like my daughter's experience with rhubarb, which was VERY bad and very quick). The one thing no one mentioned is this idea of "leaky gut" that I've been doing some reading on. Is it possible that food is getting into the blood stream before being properly digested? Could it happen within 5 or 10 minutes? Or could neurotransmitters be affected by the smell of food, or the action of chewing, or some other thing? I know I'm jabbing in the dark here, but just throwing ideas out helps me a lot. Thanks again for your thoughts, and I'm certainly open to hearing more! Calicat p.s. Today's been an extremely mild day for my daughter!! (I probably shouldn't jinx it like that )

Hi again, Well, it's been a very good week overall since I started trying recommendations from here (Mag, multi, enzymes, additive-free diet). For the most part, I'd say tics are down significantly, in both frequency and intensity. However, I am noticing a definite pattern emerging. (OT -- speaking of emerging, we had our first beautiful moth emerge from his cocoon Saturday evening... a Virginia Ctenucha, a little fuzzy yellow caterpillar that becomes a very striking black-winged moth with a dark yellow head and deep blue body. Yay!) Anyway, tangental me, back to the topic at hand. This is the pattern: every time she eats a meal, the tics increase probably 5 minutes into the meal and stay elevated for maybe 1/2 hour after the meal. Then everything goes back to normal. This morning, she didn't seem hungry so I let her not eat until 11:30, and her morning was almost tic-free. So, anybody have ideas on what this could mean? If it is some kind of food intolerance, why is it showing up so quickly? Leaky gut? Any other ideas? Thanks, Calicat

Thanks Brenda, I spent quite a while going through this information today and making notes on things that triggered ideas and connections for me. Very interesting! Calicat

Wow, thanks for the responses on water and mold. I will definitely be taking some steps soon. The estimate is an excellent idea, as well as all those little things that can all add up to help the situation a lot. I'm so thankful I found this board, or I think I'd be going crazy. Kim, thanks for the study... I'm so glad it makes sense rather than being "random". P.S. My daughter's tics are quite mild today. I feel like things are already coming together, even though I know we could still have a long road ahead. That's ok; this fabulous hope is a great thing. Calicat

Hey guys, Thanks for all of your responses and ideas. Kkver, I knew about the rhubarb leaf being not so great, but it was of course only the stems we ate... I wonder how different they are? I will certainly not be feeding it again to my daughter any time soon! Faith, thanks for the book recommendation--I will definitely seek it out. Hope the library has it. You asked about how she did after a while. Well, basically it was non-stop ticcing until she fell asleep! I think by 1 1/2 hours after eating it, the ticcing was that way. Between throat, sniffs, and eyes (a bit), I'd say a tic every couple seconds. This was a marked change from the previous day (and the whole day leading up to the "rhubarb episode", as it shall hence be known), a day when her father said that she was doing the best he'd heard/seen since this started a month ago. By this morning, her tics were much reduced again. As for behaviour, she did not continue with the defiance, but became much more hyper than usual, and could barely stay on her chair during supper, and got very "silly" teasing our guest repeatedly. Am I willing to re-challange the raw rhubarb? Umm, I'm terrified! But I may try it one of these days (and then leave her with her father until bedtime!) Kim, thanks for the great information on oxalates; it was so helpful! I had no idea. I was intrigued by some of the things mentioned in the article... like excessive thirst and frequent urination being possible signs of an oxalate problem. That's been my daughter for many years! I will keep an eye on her oxalate consumption and if I notice a pattern, I may join that low oxalate diet yahoo group. Thanks again, everyone. I'll keep people posted on the oxalate issue and patterns I notice. Calicat

Hi Kim, Thanks so much for the info! It's such a relief that I got those mixed up, so I won't have to drag her back to the doctor again and the lab for another needle. (Mind you, she was such a little trooper having her blood taken that her eyes didn't even water... not bad for 5 years old.) Thanks for your quick reply. Calicat

Hi, one more quick question... I took my daughter to get her blood test today, and I realized that I hadn't specifically asked for the 72 hour culture that I had read about elsewhere on the forum. I tried to get the lab technician to add a note at the bottom, but they wouldn't. They said I'd have to get the doctor to request it specifically. They also said that maybe the 72 hour is the standard protocol, but I said I didn't think so. Anyway, was it completely a waste of time if they do the standard 24 hour culture? Will I learn anything, or should I go get ANOTHER lab requisition and do it all over again? I really need to find out if PANDAS is a possibility, because it might fit. Thanks, Calicat

Hi everyone, Sorry, I'll give an update soon, but time is very tight at the moment, as I have somebody coming to my house shortly and it's a bit of a mess! Anyway, my question: My daughter was doing quite a bit better the past few days (vitamins, magnesium, no additives, etc.). Then I gave her a few sticks of raw rhubarb (with the tiniest bit of sugar) and within 5 or 10 minutes she was ticcing quite a lot more. She seemed like she couldn't get enough of the taste, and wanted more, more, more (but I said no after the third stick). Also became kind of defiant and annoying after 20 minutes or so. Rhubarb is not a regular part of our diet. What do you think? Is it high in salicylates (or whatever that word is)? Thanks in advance for your replies! Heidi

Hi everyone! Thanks for the warm welcome. I appreciate all your kind thoughts and suggestions. To answer the question about a strep infection... well, I don't know. I didn't suspect a strep infection at the time, although I'm certainly considering it now. About two or three weeks before this started a month ago (I have no idea about last year's episode) she was probably the sickest she's ever been in her life. She has actually been one of the healthiest kids you'd meet--NEVER had that runny nose you often see in kids, NEVER had an ear infection, she had never been on medication for anything (except the odd Tylenol), she only had a fever a few times in her life, etc. Then a couple months ago she got SOOO sick and threw up I think 13 times the first night -- about once an hour. It took a few days to get over whatever it was and then we went on a little weekend trip to visit my sister, got home a couple days later, and she was sick again (or still??). More throwing up, and I think she mentioned a bit of a sore throat too. Then two weeks after that, the tics started. The first day was throat-clearing maybe once a minute or so. Within a couple days it multiple times a minute, but not throughout the whole day. It would get very bad in the evening. Then she added the other tics, too, like sniffing. The eye blinking has really only been for the last 5 days. So, what do you think? Is this a strep possibility? Could this illness have had anything to do with the tics? If that is the case, why did the tics not come for 2 weeks after the illness? At any rate, we went to the doctor yesterday. It was a walk in clinic, so I had no idea who the doctor was or how he'd respond to my request for the strep titers test. He did fight me on it a bit, saying he would have no idea how to interpret the results. I said I would (with this forum's help, of course!). So, he admitted that what I was saying was "way over his head" about PANDAS and so on, even about tics in general. Pretty good to admit that, I thought! Finally he gave in and said he'd CC a copy of the results to my home. YAY!! We'll go get that blood test tomorrow. Little by little, step by step... Now I want to go get my water tested. We have well water here that most people don't drink due to asthetics, although we are told it is "safe". For drinking water we use store bought, but I've always used the well water here to cook with, as I thought cooking would kill any bacterial contamination. Now I'm thinking maybe there's more than bacteria--maybe there are metals, etc. We only moved here a year and a half ago, in the winter. That first spring, she had her first episode for a few weeks. And now again this spring. What do you think... could water be a problem or exacerbate a problem? Also, there seems to be some mold IN the basement walls (drywall walls). I don't know what kind. I know my own sneezing-type allergies exploded when we moved in here. I actually use a single dose of Flonase once every 8 days or so, whenever I feel the sneezes coming back on. It keeps it completely under control that way, and I can''t believe the package suggests to use two doses every SINGLE day to have "best results". NO WAY!! I wouldn't even take it at all if it wasn't for the fact that I get completely incapacitated with up to hundreds of sneezes a day. Anyway, enough about me. What do you think about the water and the mold issues? By the way, I get an extremely good deal here, and truth be told, could not really afford to move or rent a more expensive place (and they're ALL more expensive). Thanks in advance for all your thoughts! Calicat

Hi all, I've been working my way through reading pretty much EVERY post here on this board, and I'm on page six now. Thought it was time to jump in and say hello! I live in Ontario, Canada, and I have a 5 1/2 year old daughter who has been having tics for the past four weeks. This also happened last year during the springtime (although I think a bit earlier), except it is worse this time. Last spring she had a throat-clearing tic only, which varied but could occur multiple times a minute. This time she has the throat thing, sometimes followed by a sniff, or a sniff-sniff-sniff, as well as a bit of eye-blinking and teeth grinding occasionally during the day and night. Once in a while she does that "trying to get a deep enough breath" thing, but infrequently. Oh, and her tonsils look reddish, swollen, and "veiny". All of this has been fluctuating in severity over this month, with hours going by with only a couple tics or none at all, especially if we are playing outside. But then sometimes it can be 10 or 20 times a minute, or a lot more if you count the individual sniffs. My daughter is a very kind, smart, and talented girl! She loves (as I do) learning about and keeping bugs like caterpillars and snails (we have 3 cocoons and a chrysalis right now). She sings all the time, and knows many hundreds of songs, sings very well, and likes to practice learning harmony along with me when we are singing. She's good at art, and running. She loves cats, and all other animals, too. She has always been very verbal, and has a super vocabulary. Just thought I should mention that stuff too, so she doesn't appear to be a list of "symptoms". I've done my crying, and now I'm moving on to action. Last year I figured out it was probably a tic, but then it went away and I didn't think much about it. Now I'm convinced it's tics. None of her four grandparents get it at all: "Here honey, have a throat drop." or "Do you think if she just blew her nose really well..." or "Maybe a Claritin or Sudafed would just clear this up." It is very difficult to explain that even though I suspect this is at least partly caused/triggered by allergies, it is causing a neurological effect, not a traditional allergy. In the past few days I've started an additive-free multivitamin, a liquid magnesium supp, an Epsom bath this morning (which seemed to take away the tics while she was in it) and will be starting a house-makeover, as I strongly suspect indoor allergies for both of us (mine are "traditional" allergies... mostly sneezing). Also will start digestive enzymes, and have placed a call to the local environmental/allergy doctor and chiropractor. I feel better doing steps rather than waiting to see. When I look back on it, I see traces of minor (I think) OCD in both my family and her father. Her dad has these little things, like he can't stand to have stuff (any kind of goop) on his hands, and he wet the bed until nearly 12. My daughter also has very little bladder control at night, although she was day-trained by 2 1/2. My sister once picked a bald patch in her hair, but stopped after a while. My mother has gone through stages as an adult of picking little places on her skin until she's covered in little red irritated spots that look like acne all over her arms or tummy or face. My other sister used to count stairs and wanted to end up on her right foot on the last stair, but she says she forced her mind to stop doing that. I had the deep breath thing occasionally as a kid, and was driven nuts by this little callous thing on my foot, and I would get out of bed at night for a couple of weeks just to try to cut it completely away with a nail clipper. So, I can see there maybe being some genetic something-or-other going on here. Anyway, that's my story, and I hope to get to know you all better in the coming weeks and months as we battle this out. If anyone notices any similarities with their own story or has suggestions, please let me know! Calicat