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Does it get worse or better...?

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  • Does it get worse or better...?

    My daughter has been "ticking" for about 5 months now. It started out in the summer as a little cough, which I attributed to some sort of environmental allergy, but then she started jerking her head slightly toward her shoulder from time to time, and opening her mouth really wide once in a while...and clearing her throat a lot...and then there's her "whole body hiccup" which she tries very hard to control--but can't-- because it gives her bladder a squeeze...which causes other frustrating complications... I'm not really sure if this is a mild case of TS....and if so, if it's going to get worse....She's 10 years old. Can anybody give me an idea of what's in store for us, from your experiences of how this (unkind and uncalled-for) phenomenon progresses....? (And what we did to deserve this....?)

  • #2
    Does it get worse or better...?

    I have been doing some research for my child and one thing you need to ask yourself is..... has your daughter started any new medications in the time her tics started and if there is anything new in her environment or diet. I have read a few studies that say TS is the result of an allergy, how true this is I don't know. I have taken my son off of milk, not all dairy but most. He is drinking chocolate soy milk now and doesn't notice much of a difference. I have noticed an improvement, I have also added alot of oils, flax seed and fish oils. A real good one that a doctor recommended to my friend for ADHD. Efalex, it has no mercury and good fatty acids. There are alot of people who think autism, TS to ADHD and OCD are caused by low levels of essential fats and oils. There was one story I read maybe on this site about a family who moved near a corn field, it took them a while to realize this is why their child developed TS. Once they moved and took corn out of the diet they removed the diagnosis cause the tics went away. I am going to go to a naturopath when I save up some money to get vega testing, it is more thorough than allergy testing and you can take things in your own house like cat hair if you are suspicious of a certain thing.

    Good luck, we have our first doc appointment at the end of this month, if anything interesting is learned I will let you know.


    • #3
      Does it get worse or better...?

      Thank you so much for your reply, Sandee!! I can't think of anything new that was added to my daughter's diet, medication, or environment last summer....but I'll keep reflecting on that... I've always been the kind of mom that keeps empty-calorie snacks to an absolute minimum, and I've spent years looking for healthy alternatives that have as few artificial chemicals as possible, so chocolate soy milk, for example, is already a regular part of our diet. My kids eat very few sweets, but lots of fruit and vegetables and as much of a healthy variety as possible, including tofu products and meat too... My husband has taken both girls to a chiropractor-"plus" type of practitioner and they feel that my oldest has Candida, and possibly the younger one too...the one with TS... and I just read on the Internet today that some natural health practitioners feel that TS is caused by Candida... I tend to be very sceptical of the whole Candida idea, because my husband and some members of his family are pretty obsessed with health problems and chronic illnesses like CFS and Candida...and the dietary restrictions needed to combat Candida are in my opinion virtually impossible to practise, especially with growing, hungry children... No sugar at all, for example, in any form whatsoever, even fruit and juices...and nothing with yeast or vinegar, like bread or soya sauce, and starches...and other incredibly broad, sweeping food restrictions... I just can't buy it...but if it somehow has something to do with my daughter's TS, I don't know how I can ignore the issue... Just today, I saw new tics develop, vocal ones now... It makes me feel almost like she's being invaded by some kind of demon, and it frightens me...because I find it hard to face...and I think it's getting worse...and I can't get away with trying to deny it, like I would usually do... I appreciate any help/input/guidance/comfort you have to offer....!! Do you know anything about Candida? Any thoughts on that? Eating more fish is a good idea.. Thanks....



      • #4
        Note to Katherine

        Dear Katherine

        My heart goes out to your and your daughter. It sounds like your daughter is having a really tough time with TS. These symptons do come and go, but sometimes it does seem like they come and stay......far too long.
        My son has been dealing with this for 5 years now, but it is only the last 6 months that they have gotten so bad that they are hard to live with. Right now his worst one is a stuttering vocal tic that is hard for him and hard for everyone else around him. Stress definitely makes it worse.. Some days are much worse than others. He will have a few days in between when I don't notice anything, and other days when he can hardly get anything out of his mouth.

        He also has had head jerking tics, arm shooting out unexpectly ( I got hit a few times)...

        He does a lot of throat clearing, especially after a meal. Seems like eating tends to trigger it. I don't know if TS is allergy related or not--my son is a very picky eater, so I'm happy if he eats. He eats very little junk food or sweets. If any one comes up with a diet or natural type medicine that would help, I would be glad to try it.

        For us, not letting the tics bother us, seems to help him the most. And sometimes that is very difficult. And often I don't know how much of an explanation to make when he is making weird noises in a public place (like the library, for instance) and you get these questioning "looks".

        Good Luck -- and you are not alone in this this.....



        • #5
          Hello Lena

          Thank you so much for your comments, Lena. Your son has had TS since he was about 7? You say he is a picky eater, so it would be really hard to control his diet... I'm still intrigued by the idea that maybe TS can be influenced by what the kids eat... Sandee wrote about the child whose symptoms disappeared when they moved away from a corn field and eliminated corn from his diet; she also said that some people feel TS is caused by a deficiency of essential oils in the diet... I'm wondering if anyone else has any other experiences with tics being reduced when a certain food is increased/decreased from the child's diet... I read on this TS site, too, of a drug that helped tics--Clonazepam?? Do you have any experience with that, Lena? I'm not at the point where I'm willing to consider drugs yet, though... I'm still trying to understand the source of the disorder... If it's dietary, then regulating the diet could address the problem... Could an overgrowth of yeast in the body that throws the body's bacterial balance out of whack (Candida) cause TS, as one article I read suggested? I'd love to know more about that, because my husband feels that both our girls have Candida....(and he didn't know at the time that someone had linked that to TS...!) To fight Candida, you have to eliminate sugar in all its forms, natural and artificial, foods with yeast (bread), milk products, anything with mould or fungi (ex mushrooms, vinegar)...which just leaves meat and vegetables, really....and that's why I really can't see it as something any child could possibly be expected to adhere to.... Yet what else can we do to alleviate symptoms? Are drugs the only answer?

          Do you have any idea why your son's tics have gotten worse in the last six months? Has anything changed in his life during that time? Could puberty have anything to do with it? My daughter's tics are still only occasional and fairly tolerable at the moment....but she's only 10 now, and I'm afraid of what other unpleasant developments are still in store... My daughter clears her throat a lot too after eating; this seems to be a recurring comment among TS moms...and it makes me wonder again if TS is triggered by certain foods.. I wish there was a way of finding out...

          Thank you so much for your kindness and compassion, Lena, and thank you for taking the time to share your comments with me. I appreciate it so much! One of my biggest struggles at the moment is feeling inadequate as a mom...and the TS burden weighs so heavy on my heart, especially since there seems to be nothing I can do about it; but I also have a teenager that is incredibly, intolerably demanding at times, and it sometimes seems to me more than I can bear....

          Thanks for your encouragement.



          • #6
            Does it get worse or better...?


            I know a bit about candida and it has been in the back of my mind that Candida might be the cause of my son's tics too. He was a perfect little baby, then he got thrush. I treated it and thought all was fine but he has never been the same since, didn't sleep well again and always wanted sweets. I have taken him off milk recently and have noticed a big improvement except when we are in the car. The rest of the time there are very few tics. This thrush thing has always been in the back of my mind. thrush is overgrown yeast in the mouth and throat. I myself have tested positive for candida a few times in my life and have gone on the diet above to get rid of it. You don't have to stay on that diet, just till it is gone. I had noticed a big difference in how active his tics were after halloween but didn't think anythign about it until I read another post on this board about one child getting much worse after all the candy at halloween. If your children have been on steroids or antibiotics in their life time before or after TS there is a very strong chance they have an over growth of candida. We all have it but it is to be in balance with the bacteria in our system. A very good way to have this tested is to have Vega Testing done in a naturopaths office, they can tell you allergies and food sensitivities your child might have too. I told my friend to ask her naturopath if they have anything to help TS and he told her yes and that I should come in. Problem is I dont' have alot of extra money right now but if I do go in I will let you know.


            • #7
              Does it get worse or better...?

              Me again

              If your child does have to go on a Candida diet, pastas are okay to eat, if he likes alot of pasta you can buy the spelt kind. Lunchs can be any sandwich but wrapped in a wheat tortilla, or soups with non yeast crackers. Unsweetened yogurt, salads, mcdonald's protein platters and all veggies are good too. There are ways around such a limited diet and health food stores that sell yummy products without yeast. There are supplements that help kill off the excess yeast faster too. Good luck with it if you try it. Keep us posted.


              • #8
                Thank you Sandee

                It is so cool to feel looked after and watched over, almost, by the people in this forum...! Thank you for your comments about Candida, Sandee! They really encouraged me.... I thought the whole Candida thing was just a bit too much...but if I at least try to avoid yeasty foods and replace them with whole wheat tortillas, it's something, at least, to start, that can maybe reduce the occurrence of tics, if not eliminate them.... We always have whole wheat spaghetti when we have pasta, and I already avoid sugar...though not fruit and sweetened yogurt... My kids would never eat the unsweetened version. How in the world do we find things to put in lunches with all the restrictions, though? Our standards were always based on real fruit snacks, juices, apple sauce, yogurt, etc...and no junk food. I have started to give them eggs and meat for breakfast (which I always avoided before, in favour of whole-grain health-food cereals they sell at Superstore, fantastic nutritious alternatives to all the sugar-filled ones...) I will, though, thanks entirely to your encouragement, make an effort to look for products without yeast in health-food stores... Normally, I try to find health foods in more reasonably-priced places... Even Wal-mart carries some of the same products as a health food store (one face cream that I buy, for example, "Derma e") at a fraction of the price they ask elsewhere...and Superstore has a lot of fabulous healthfood, and "Jason" brand products, too, that are sold in health food stores at a much heftier price...but I've never really researched yeast-free foods. And that's about to change!!

                My daughter has had a number of kidney infections over the years, so I guess the antibiotics have thrown off the yeast/bacteria balance in her body. It makes sense, I guess... She doesn't drink a lot of milk, though; her main cravings are fruit, and she eats a fair amount of that...along with a wide variety of other foods. She's always been a healthy eater. It's my other daughter that's quite fussy; and she's actually the one that has been diagnosed with Candida... Anyways, I will research the Candida diet and surf the Net for more specific guidelines...and look into the supplements you mentioned, and read more labels at Superstore.... In the meantime, your suggestions are greatly appreciated! Thanks again, Sandee!!


                • #9
                  Does it get worse or better...?

                  Let us know how it goes... oh and I didn't mean unsweetened yogurt I meant sugarless my kids wouldn't eat unsweetened either, hee. I think there are a few yogurts with splenda in them, is one Yoplait???? You could go to an health food store and ask about supplements that help kill candida and go to the fridge section and get some acidofolis (sp?) it is live natural bacteria that is supposed to be in our digestive tract, same as what is in yogurt. I have my son on that now, his tics are getting better too, not so often. There are also specific yeast cleanses that I was thinking of getting for my son, I would have to ask first if it was safe for him.

                  Also a mother on my other son's hockey team has children with many health and mental issues and she has been having alot of success with her kids by taking them off foods with colouring, she has read many reports of autism to parkinson about chemicals and metals in our systems causing them. Apparently red and orange dyes are the worst and is thought to be the cause of ADHD. So she has no juices, licorice, cheddar cheese, coloured candies, ketchup etc in the house. Her son with Aspergers has been doing much better now that he is off this stuff. So that is something else to consider.

                  Your daughter having been on antibiotics might be the link you are looking for plus halloween being a few months back with all the sugar. Do you have access to vega testing somewhere? It would be a good start incase it is an allergy that has come up for her.


                  • #10
                    "Dr. Sandee"!

                    You've given me more food for thought, Sandee...(literally!) I'll look for yogurt with Aspartame or something now. I've always stayed away from anything artificial, but it looks like I'll have to develop new criteria for the food choices I make for my children. I'm the kind of horribly awful Mom that didn't even send her kids out for Hallowe'en until recently (when I finally caved under the peer pressure...) because I never allowed them to have candy. Ever! (Even now, I "buy" their Hallowe'en candy from them, and then get rid of it...) I do buy a lot of cheddar cheese, though, and pure juices like Sunrype fruit and veggie juice. (They don't have dyes in them, do they?) We do use ketchup once in a while, but not often. My focus has always been to give my kids food that is as natural and free from chemicals and additives as possible, without going overboard. That means I don't shop in Health Food Stores, except for special occasion treats....(That's where I used to buy treats for their Christmas stockings, for example.) I also stayed away from processed meats with nitrites, etc., though not completely. I try to keep their diets as healthy as possible, but to do that it involves a lot of compromises... flavoured yogurt, for example, and organic cereals from Superstore...All that to say that in my case I'm not sure if metals and dyes are contributing factors in my daughter's TS... But I will definitely be looking for things like yeast cleanses...and as a matter of fact, I have some Acidophilus in the fridge right now, and I will be feeding it to my kids very shortly....! Thank you "Dr. Sandee"!!! I don't know any vega testers, but my husband's chiropractor is pretty avant-garde; he's the one that diagnosed the Candida...but I don't think I'd be willing to dish out the cash required... We'll see how desperate I get... I'm going to start with giving them an Acidophilus capsule every day, and see what effect that has. Then I could move on to other, gutsier actions such as yeast cleanses...and then maybe a chiropractor/vega tester visit could be considered if things don't improve... So I've got new tools to try, thank you so much Sandee; it makes me feel less victimized by this... You are awesome and so helpful!!!


                    • #11
                      Does it get worse or better...?

                      You sound like you are on top of things with food, even more than me. I just learned about the food dyes, I just figured they were safe like the ones in my cupboard, maybe those aren't either.

                      The sweetened yogurts I meant though have splenda not apertame, splenda is not a chemical, it is made from sugar but changed so the body doesn't react like it is sugar.

                      Keep us posted, I have a first appt for my son this coming monday.


                      • #12
                        Does it get worse or better...?

                        Thanks Sandee!! I'll look for Splenda... That really helps, because I wouldn't have known that.

                        Good luck on your appointment Monday (though I might chat a bit with you before then..who knows?) That's with your doctor, or TS specialist, or what..?

                        I've been printing out stuff about Candida from the Net, but I haven't gone through it yet. I'll definitely keep you posted about whatever discoveries I make...because it's a real pleasure keeping in touch with you all!!


                        • #13
                          any frustration that goes with that

                          hi my name is sonya my son was diagnose with ts 2 years ago and i tell you he is been on clonidine that made him really slow then they tried reperidone that made him worse like a horse on a race track. and now he's been on concerta for the past 6 month but i think he needs a dose ajustment i dont know how to begin because we've been through so much and also i though i could cope with but last week i figure that i was kidding my self because i don't know how to cope with it anymore. we've been to spychyatrist and neurologist i its just seems that they dont what they are talking about i'm just looking for someone that is copping with this and mabe share some information and comfort to make me feel human...and normal that im feeling the way i am sometimes.......sorry if this is bothering you but i hope i'll be hearing from you.

                          thank you sincerly yours
                          sonya gravelle


                          • #14
                            Salut Sonya!

                            Je n'ai pas beaucoup d'information tr?s utile ? partager avec toi, Sonya, parce que c'est encore tr?s nouveau pour moi, TS et tout ?a....mais je voulais r?pondre tout de suite ? ton message parce que c'est tr?s claire que tu souffres, et ?a me casse le coeur... Ma fille a 10 ans et depuis 6 mois environ elle a des tics qui ?voluent et qui changent avec le temps... R?cemment, j'ai lu qu'un d?s?quilibre de levure dans le corps, une condition appel?e Candida, peut ?tre reli? ? TS, alors je suis en train d'explorer un changement de di?te pour ma fille pour voir si cela r?duit ses symptomes. ?a veut dire qu'elle doit arr?ter pour un bout de temps ind?termin? de manger des fruits, du jus, toute source de sucre, tout ce qui contient de la levure, etc., etc., etc....mais je suis pr?te ? au moins essayer ?a... Je n'ai pas encore fini mes recherches dans ce domaine-l?, ni commenc? ? investiguer les m?dicaments comme toi tu es en train de faire...mais sache que tu n'es pas seule... J'ai d?couvert ce Forum il y a seulement deux semaines, mais d?j? je sais qu'il y a beaucoup de mamans avec beaucoup d'exp?rience avec TS et qui ont beaucoup de compassion qu'elles sont pr?tes ? partager avec toi... Continue ? poser des questions et ? partager tes exp?riences, et tu vas recevoir beaucoup de conseils, de compassion, et de bonnes id?es ? essayer... Je te souhaite beaucoup de courage, et je t'envoie beaucoup d'amiti?....!! Ne l?che pas Sonya!!


                            • #15
                              Does it get worse or better...?

                              For those of you who don't speak French....I was just telling Sonya that I didn't have a whole lot of wisdom and advice to give her about TS, since it's still quite new to me, but I mentioned about what I'd heard concerning a Candida connection...Mostly, though, I just wanted to tell her that she's not alone, and I shared how that even after only two weeks or so of participating in this forum, I'd found that there was an abundance of Moms with a wealth of experience, compassion and generosity of spirit who would give her suggestions about things they've tried so she can feel less helpless and alone...and I encouraged her to continue to ask questions here. My first instinct was to immediately comfort her in any way I could because it was clear she was suffering, and I did it in what I assumed was her first language (which I've been teaching for many years, because it's a passion of mine....!) Afterwards, I thought maybe it was rude of me to write only in French. Sorry about that...