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Everything posted by laurena82

  1. The infection so near to onset would definitely be a red flag to checking out strep/etc. Re: the exertion increasing them--is this exertion something like running outside? Reason I ask--my sons tics would explode expodentially when certain grasses/trees were in season---and, of course, worse when outside in it. (Something to keep in back of mind, anyhow, esp if symptoms get worse during similar months each year) BEST WISHES!
  2. I'm sorry I havent been reading boards much----- I've been through allergy/food elimination diets--- 1. Generally you should allow 7 days for foods to clear your system when eliminated---they claim longer--10 days to2 weeks for dairy. If 26 days into it no improvement with those eliminated---I dont think youre gonna see it. However: 2. (this is big)--- When you reintroduce foods----generally second meal of it (same day) you'll see reaction already---although some foods are up to 48 hours-------------SO ONLY INTRODUCE ONE AT A TIME,so you know which causes reaction,...but here's the (this is big!) part-----THE REACTION YOU GET WILL BE THE SAME SYMPTOMS----- ONLY GREATLY MAGNIFIED--- (and, from my experience----I mean GREATLY magnified!! ---> there will be NO DOUBT IN YOUR MIND that you are having symptoms..... Food allergies are VERY frustrating to figure out/deal with...........((hugs)) &BEST WISHES!
  3. That's OK--- I dont need to go to a recreational drug forum
  4. It was a recreational drug using forum. I found it in a Google search when I was searching for brands of drugs. I'm not sure if posting a link here is allowed.
  5. Wow---that is interesting! THANKS (do you remember the website that people were posting on re: generic drugs? )
  6. Hi Trinnie-- About 15-20 years ago I took my son to a chiropractor who did applied kiniseology for food allergy testing---------- we logged what he ate for 1-2 weeks,...then anything he ate more than 2-3 times/week we brought food sample and Dr did AK testing when that food was on his tongue. It identified ?? 6- 8 things probably--------we then eliminated all of those---> and he had DRAMATICALLY lowered motor tics. (unfortunately he still had some vocal tics. It cost $90 as I recall. He also tested via putting vitamin supplements on his tongue along with the "allergic" food to "neutralize" it----we gave him those vitamins for awhile,........but in our case, anyhow, the food avoidance was much more noticeable difference than any supplements at helping. BEST WISHES!
  7. Lele-- I'm glad your son is doing better. Chemar-- Yes......I remember "the sneezing girl" in the media----whatever happened with that? When (or did?) her sneezing stop? Did they implicated PANDAS?
  8. (off topic, ....well, somewhat ).... I just noticed this in your signature line: How cool is that! (I never heard that quote from him before!)
  9. Hi Trinnie--- Yes, the waxing and waning of symptoms makes it SOOOOO hard to figure out if something helps....or is just waning then....!! Plus, as others mention----what's great for some seems to do next to nothing (or make worse!) for another! augghhh!!! For my son, ....food allergies was huge trigger---and what helped me identify major ones was finding a chiropractor who did "applied kineseology" to identify food triggers-----I kept food diary of what he ate for one or two weeks----then anything he ate more than a few times/week, I brought samples in, and one by one, he put on his tongue with muscle testing. With foods that decreased muscle strength, the chiropractor then put supplements on his tongue to see if strength increased with these, and those that did we started giving, as well as eliminating the food triggers. FWIW--in my son's case---eliminating food allergans was WAAAYYYYYY more successful at noticeably decreasing tics than adding any supplements------------BUT, as you can see from others posts--------others have had different experiences! ANYHOW--re: the chiropractor, it cost me $90....but that was about 15 years ago. At that time, anyhow, most insurances didnt cover chiropractic---so they were pretty reasonable with charging rates people could afford out of pocket............but not all chiropractors are as wholistic as others----- sigh....you have to shop around with all of these things................(((((((((((((HUGS!!!!!)))))))))))) (PS: as another posted on here recently----pollens, etc might be a consideration if you noticed symptoms worse this time of year usually: in summer/fall on annual basis?? ??)
  10. Hi Miss X-- Welcome I'm not any expert, but just wanted to say "hi" and "welcome" to you also---as I just looked in to see what was new here, and the board doesnt look very busy so you havent gotten many responses yet. Chemar has and will give you good advice----when you read here, you'll see so many have had experiences of degrees of success with so many different things----it IS hard to know where to begin. From your history, the PANDAS connection seems relevent, perhaps. Another thought---since so many things to try include diet modifications and dietary supplements---eating a "healthier" diet of more basic natural foods never hurt anyone---that might be a simple place to start. (If/when you want to avoid certain food allergans, you pretty well have to be eating basic foods,as commercial foods have so many additives/other allergans in them---eg food starches/corn syrup/whey/colorings/flavorings etc---you cant really tell what youre getting/avoiding until on more basic natural foods diet anyhow) And then while you're doing that--start reading up on other things. Also--it is intriguing re: the lack of symptoms ages 11-15----------any thoughts you have on that? Changes in enviroment/living situation? (all I can think of is hormone related?) Consider also time of year--------are your symptoms worse one season vs another? ((((((((((hugs))))))))))))) and best wishes......!!
  11. That is exactly how it was with my son. "Hey...hey.......hey mom,.... hey mom...hey mom....hey mom I.....hey mom I went outside and did this, that and the other thing etc etc etc (completely fluent..)......". Also,...when he was really excited....he would have complete blocks, ..where he couldnt get ANY sound out at first. The technic they taught him that actually worked had him deliberately saying the first words VERRRRYYYYYYYYYY slowly and dragged out....and I think even starting with saying the first PART of the word even slower.................and then as the sentence went on, he could pick up the pace. But the first few weeks of this therapy he was only saying one word at a time he read VERY slowly and drug out......then I think it progressed to two...then a phrase....a sentence..... He was about 9 or 10 at the time.
  12. Hi KD-- ((((hugs))))) to you! I saw your post, and : grabbed my eye--- I'm not sure what type of problems these are, but I went and dug up an old post of mine for you (re: stuttering at TS). My son's speech problems showed up as blocks primarily when he would start a word or sentence. Not sure if similar to yours at all, but my (frustrating) experience was that the speech therapist wanted to "blame" the speech problem onto the TS, as being *nothing* she could do about the TS---I should put him on meds----and, as a result, he went 4-5 years with severe speech problems, til I took him to a different speech therapist---and he learned some techniques that actually helped him become fluent. He's 26 yo now, and has been completely fluent since a year or so after he started with that other therapist......... ((((more hugs!)))) and best wishes!! (A FWIW story for you, anyhow.......)
  13. Thanks for this post. My daughter has stuttered for about 2 years now and has developed motor tics over the past 6 months and vocal tics in the past month. I always thought that there was something a little different about her stuttering, but the speech therapist said it was just run of the mill stuttering. We did the Lidcombe program for about 6 months with very little improvement. The most improvement I ever saw in her stuttering was when we started her on GABA for anxiety. It almost completely eliminated the stuttering for a couple of months, but then it came back full force. Strangely, it seems that the stuttering has improved in the past month since the other vocal tics started. I'm really pretty sure that the stutter is a tic. The speech therapist wants me to get a neurologist to confirm that the stutter is a tic, but I seriously have doubts that a neurologist can do that. Do you remember the type of therapy that finally worked for your son's stutter? The speech therapist (who specializes in stuttering) is willing to try something different and I'd love to know what helped your son. Thanks so much. Sue Hi Sue-- I'm sorry I didnt see your reply to this until now. I havent been on the board much, but I checked in and saw someone else wrote re: stuttering, and I went back to try to find an old post to link to her (although I dont know how to "link" posts, either!)---at least this way I can *bump* it up on the posting list-------- RE: what type of speech therapy---- I dont know the name of it, but it involved teaching him to start his word/phrase R-----e------a-------l------l----y slow----------he had to deliberately drone (was that what he called it? ) the first few words out REALLY slowly and drawn out.......then, as he got into the sentence, he could pick up the pace. My son's "blocks" were primarily at beginning of sentence. What I DO know is that the speech therapist who helped him had additional training in "dysfluencies"----that the therapist at school didnt have---nor did she seem to know she didnt have the right training-----------once she learned of "TS" diagnosis---it was like she washed her hands of being able to help him .."oh, he has TS---I cant do anything about that"-----so, nothing happpened for abour 4 plus years......... I'm glad your therapist is willing to look into other things. I'm sorry I didnt see your post sooner. As I recall, at first he had simply a list of words that (I think?) he had to say while looking in the mirror at how he said them SLOWLY.... I will PM you also........
  14. Yup--corn starts tassling around now....well, or sooner, depending on your location I guess. BEST WISHES!
  15. I've been doing the alternative route since Oct 2nd. I know the day, because it was the day I had such severe tics that I decided I'd do whatever it takes to solve it. Prior to the alternatives, I was on tenex, clonondine, then finally went to tetrabenazine which is an orphan drug approved by the FDA only for Huntington's disease, but known to help with TS and NOT lead to the possibility of tardive diskinesia (probably misspelled). Note, that I had dropped all meds around June of 2010 as I somehow went from what was mild OCD to somewhat rough OCD and I finally had to start taking OCD meds as well - and for some reason the combo of tetrabenazine with the OCD meds (standard SSRI's) was next to impossible to handle. Taking one or the other -- no problem -- combining them -- horrible!! today I am at my absolute wits end - I told my wife today that I'm done with the diet - it does not work for me. I don't understand why, but I just can't get it to work. I was pretty upset, and told my wife that everyone on here that is having success with the diet are children who don't have it as severe as I do - so for them it works, for me it does next to nothing. I'm also on the bontech supplements - again, expensive, but worth it if I actually saw results. I'm 43 years old, and still do not understand why I was unable to shake this TS as it appears most children do when they become adults. It's so baffling to me, and extremely frustrating. I tried finding a support group in my town, but finding one that has any adult member with TS seems to be near impossible - probably because it's just so rare for adults vs. children.... Anyway, long story, but I'm this close to going back to my regular meds. I'm trying to be strong and not do it, but to be honest, I am just not seeing results from the diet and it makes it hard to stick to a diet that is difficult to begin with (especially when on vacation where it's so hard to even find a place to eat) if it appears to do nothing for you. If nothing else about the diet, I have weened myself off of caffeine, diet soda, high-fructose corn syrup, alcohol, and foods with artificial colors/flavors - things I shouldn't have been consuming anyway. I have asked for a list of recommended doctors (hopefully for adults) from my local TS support group, and do intend to talk to one of those doctors. Rick Other things to consider: I feel like when I eat pomegranate, there is a slight reduction in tic severity. I was not expecting this at all when I first ate pomegranate, so I don't think there was any placebo there. Some studies(?) report that quinine may reduce tics. I don't know the dosages, but you can get it in tonic water. IMO, tonic water is disgusting, but I would drink a bottle of it a day if it helped tics. You may want to try those two things. Hi Guy 123-- Just wondering if you ever tried going off of the 1/4 tablet of clonidine? I'm just remembering my son was on one tablet (0.1 mg), then, by early teens, he was fluent plus tic free, and neurologist suggested weaning down, so we went to 1/2 tablet, and he stayed good....so I was going to go to less, and the neurologist said that he thought son would be fine with none---so, we tried it, ...and he was fine. (he probably weighed around 130 then?) BEST WISHES laurie
  16. Hi Nola-- FWIW, I remember the neurologist telling me that motor tics were much easier to clear with meds than vocal tics were..... My son was only ever on the lowest dose pill of clonidine, but it did reduce the vocal tics as well as motor tics. The environmental and diet/nutritional supplements we did only seemed to have an effect on motor tics. The reason I finally went ahead with the clonidine, is that it doesnt have the extra pyramidal side effects that many other psychotropics can have, along with the fact that all of the environmental medicine things we did still didnt touch his vocal tics, and his speech was severely impacted by the vocal tics. He did "outgrow" the need for meds by early high school, and is mid 20's now and without tics. I hope things work out for your son as well.
  17. Hi Houstonmom--- You mention the tics being worse in fall allergy season---- FWIW-- not sure if you live in a rural area or not, but it took a long time for me to learn corn was a huge trigger for him---and even longer to learn that it wasnt only corn products he ate, but also corn pollen in the air at certain times of the year. BEST WISHES laurie
  18. Hi-- I havent been on here for awhile, but came across story in newspaper today, made me think of every parent working so hard to help their kids---- I really know NOTHING of this story, other than what I've read: http://www.ageofautism.com/2011/03/parental-rights-at-risk-maryanne-godboldo.html also: http://www.justice4maryanne.com/ This kind of stuff always bothers me----- yes, there are 'no account' parents out there who neglect "proper" care for their kids.............but, (sigh) "modern medicine" is not foolproof/does not have all of the answers........and where is the "fine line" between advocating for a child clearly abused/neglected by parents in care----vs. freedom to live your life and raise your child the best way you see fit! ugh.... anyhow....thought I'd pass this on, FWIW......
  19. I would avoid any med that has "tardive dyskinesia" as potential side effect.---ask your Dr. about it--> it's funny mouth movements(primarily), and the scarey part is--> they can continue PERMANENTLY, even if/when you discontinue the medication (!!).
  20. FWIW.....I used to notice significantly increased tic-ing after candy ......turned out my son had allergies to many things in many candies --e.g., chocolate, milk...---but the BIGGEST allergy he had was to CORN---> and Corn SWEETENERS (e.g. "high fructose corn syrup" and similar deritives) etc is used in almost EVERYTHING (except higher priced "natural foods" that deliberately avoid it) because it is less expensive for the company....... Anyhow...since you've identified candy for sure......my thought would be to consider CORN as well, and do an elimination of all corn products for 5 days at least...you could add dyes to the elimination part if you wanted, but when you add them back to look for symptoms.....only add back one at a time....e.g., give it at least 3 days of returning one of them to the diet before returning the other one, just in case it's only one thing and not the other, you can differentiate.... BEST WISHES :-) !!
  21. FWIW, One of my sons (not with TS) had allergies to (among other things) milk and EGGS. When he was young, if he had a few bites of eggs or milk, within a few minutes, he'd start getting hives, and his eyes (skin around them) would really swell up. It was clearly an allergy. (dont know about an avocado connection.....we never ate them!) However, he COULD eat baked goods that had some egg or milk in them, and didnt seem to have a problem with them. So it probably depends on how severely allergic you are, as to how small amount you can tolerate. The other thought.....the "reaction" might be small enough to not be really noticed , but still be there. For example, with my son and the egg/milk allergy/hives/eyes swelling........as he got older (preschool age)....I noticed he could eat cheese without symptoms, so sometimes he'd have a grilled cheese sandwich, etc. When he got older, say age 8 or 9, he told me that he noticed whenever he had eaten cheese like that, he would notice the palms of his hands and feet start feeling itchy...........no hives or anything, but apparently there still was some sort of "reaction". ALSO, re: the "egg beater" question....this is a purchased product (name brand "EggBeaters"...)....to my understanding, they DO contain egg....but just the white of the egg (which is generally got more allergans that the yolk), but has minimal cholesterol, and they do/add something to make it taste like a whole egg instead of just the white. Anyhow, it's a product you can use if you're avoiding eggs because of the cholesterol issue............ ............having spent alot of time trying to bake without eggs....auggh...it's difficult. There are substitutions you can make....but most things arent as good as products with eggs........you can substitute applesauce for eggs in a boxed cake mix and it's not TOO bad.....there's something by "N-R-G" called "egg replacer" that kinda/sorta helps.........you can just add extra baking powder to the recipe (about as useful as the "egg replacer" in my opinion.....which is to say, not real great, ....but better than nothing)....... *******IF ANYONE HAS ANY OTHER GOOD METHODS OF SUBSTITUTING THINGS FOR EGGS IN RECIPES......THIS WOULD BE A GREAT FORUM/THREAD TO SHARE WITH US!!****
  22. wa Do you mean trouble getting to sleep? My son was like that alot, plus tics similar to you're describing. (he's 25 now...this was awhile ago...and, on a hopeful note, he did apparently "outgrow" them during his teen years). Anyhow, this board has great info re: *natural* things to do to decrease tics, etc. If you decide to stay with some pharmaceutical meds....ask about clonidine (catapres = trade name). (note: this is different than klonapen). It works on mild tics, and also makes you kind of sleepy, so giving it at bedtime was great because my son FINALLY could get to sleep easily. This is good. (FWIW....removal of all allergens did almost as much to help my son as the clonadine.......unfortunately it was very difficult to avoid all of the allergens.....so eventually we resorted to the drug...). Read all you can here, and know that not all food allergies show up on blood or skin tests. I'm glad to hear your physician is at least looking into that..... {{{{{{{{{hugs}}}}}}}}}} and best wishes! Much good support will be found here
  23. YES...I would blame it on corn fructose/etc... One year...."Santa" gave my son small candy cane at Xmas Parade......he tic'ed like CRAZY for a couple of hours afterwards.... (how can you deny him "santa's" gift?)
  24. re: There was a great book by Doris Rapp called "Is this your child?" (Or "Is this my child?" ...or something like that). It was all about food allergies and children. It had alot to do with ADHD, but it (as I recall) explained ALOT re: food allergies, and testing for them. The one thing I learned is that blood tests and skin test MAY show a food allergy.....but they can also say you're NOT allergic....when really you are....(e.g. they dont always show up on those tests). As I recall, the Doris Rapp book went into how to do food elimination diets to determine food allergies. From my experience for myself and my kids, ....the elimination diet is what will "really" show you what's causing what, if it's a food allergy. When you re-introduce a food that's been eliminated...within 24-48 hours you'll get the SAME symptom that food is causing --->only GREATLY maginified.....so that you will be left with NO DOUBTS that there is a connection between THIS food, and THAT symptom. My heart goes out to all of you......I've BTDT........it's heartbreaking/frustrating/and everything else! The "waxing/waning" nature of the tics makes it SOOOOO difficult to problem solve what's "causing" them... ---> you think...yea! the tic is GONE.....that was IT!.....but then you realize....sigh...it's just a DIFFERENT tic coming to take it's place...... (the GOOD NEWS is......my son was fortunate, and somewhat "outgrew" it...he's in his 20's now and fine.....no tics.......and many others have similar situations......I'm wishing all the best for you~~!!!!!!) ((((((((((((((((hugs, hugs, hugs)))))))))))) to all of you......there are alot of great folks here with lots of good advice and experience to share with you............ give your little sweethearts an extra hug from me tonight (said by "empty nest" mom here )
  25. I guess I hadnt seen this thread before. To add my son's story: (he's in his 20's now) His tics started around age 5-6, heavily noticeable by age 7. At age 8, I took him to a chiropractor who did APPLIED KINESEOLOGY and determined a variety of food allergies. (corn/wheat/eggs/dairy/chocolate). When we removed all of these food allergans from his diet, his motor tics were reduced at least 90%. He also stuttered and had vocal tics. Stuttering itself is considered a vocal tic as well. The food allergy avoidance did NOT help the stuttering, and he still had some of the other vocal tics (high pitched sounds at intervals, etc). However, at age 10....although he had BEEN seeing a speech therapist through the school weekly since age 6......I took him to a DIFFERENT speech therapist, who had additional training in treating DYSFLUENCIES (of which stuttering is). In less than 6 months,....he was fluent. Now, a good 15-20 years later....he is still fluent, and doesnt have noticeable tics. (note: the food elimination was VERY difficult to manage to eliminate EVERYTHING....so, there were a few years where we eased off on the diet, then put him on clonadine --Catapres---a low dose, and it was effective as well. ) I would also note that we tried allergy NEUTRALIZATION drops for the food allergies....and , for whatever reason, those DIDNT reduce the motor tics, however completely avoiding those foods did. I know many other people would swear up and down that the neutralization drops worked for them.....but ---for what it's worth--that's not what we found. BEST WISHES to all of you !
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