How do you all deal with the Tic Disorders?

User - posted on 03/04/2012 ( 30 moms have responded )

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My heart goes out to you..as I too am dealing with a child with a Chronic Tic disorder and migraines. My son is a month shy of 8 and we have been through 11 tics now in the past year and half. Right now his current tic is a head nod and a very sqeaky high pitch hiccup sound. Our nuerologist said it is best to ignore the tics that asking him to stop causes anxiety and then they get worse which we have seen for our selves. I have made all his teachers aware and asked them not to draw any attention to the tics. The noise is driving me insane and breaks my heart and brings major guilt because after hours of it I want to run away from my own child which I know sounds horrible but just being honest. It is so hard to enjoy stroy time with him doing this in my ear next to me. I am trying very hard to be patient as I do know he is not doing it on purpose. What I don't understand is how he can hold these in at school sometimes but really unleashes when he gets home. So glad to see group of people dealling with the same issues

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Michelle - posted on 11/14/2013

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Hi I new to this site as I to lookin for ways of coping with my boys tics he 9 n had them some years. I finding it hard to cope ive had to walk away. Seems like they dont happen much at school just home
Will he ever grow out of them. Not been to c neurologist yet as I guessed wot it was. Can they help or not is there any point. Help

Genevieve - posted on 07/29/2014

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Thank you for this post. I am dealing with the same situation. My son is 9. He recently developed his first real lout vocal tic - it started with his voice changing high pitched when trying to talk to me. He was so confused by it happening and then being unable to talk - I almost cried as I witnessed it happening as he could barely speak to me. The voice kept getting garbled and high pitched and also he developed other nonstop noises and humming and other sounds as well. He and I both suffered a brain injury (CO poisoning) and I really struggle to concentrate and every noise in the house distracts me now. So I feel guilty but it drives me nuts...all the noises - but I love him. I don't have much advice about it - but get a breather and take Tony's advice. I really appreciate Tony's advice on this whole situation - it means a lot. I try to not focus on the tics and noise.

I wanted to share some things that greatly reduced his tics since. Also, please keep a journal on the computer or write one to keep track of triggers. We cut out dairy for the most part and red dye (this one is hard) and other dyes if possible (in chips and candy). Albacore tuna - stay away from. When he developed the worst most agressive tics, it was at the same time he was eating tuna often. I didn't notice till recently. I did a ton of research and learned that NAC - nacetyl cysteine and l carnitine (something like that - not sure of the full name on the 2nd one) are extremely helpful in decreasing vocal tics. Interestingly enough, NAC is also used for mercury chelation. It is a STRONG antioxidant. I started giving him NAC and within 3 days the really strong vocal tic decreased to about 5% of what it was - just some humming when hyper and noises here and there but not the voice changing pitch anymore. He is still taking NAC each day 1 or 2x a day and I don't plan on him taking it forever but for now - it seems needed to clear out or fix his system. The other thing - we were sick all the time and my good friend recommended elderberry syrup for our immune systems and when we get sick - to take it. So we started with 1 teaspoon a day (this was many months before he ever had the vocal tic - but he was having lots of other tics that were interfering with his lifeand reading at school,e tc) - and we were taking the elderberry syrup for immune system support. The crazy thing is - after a week on it his tics went away. The tics he was having were persistent and stayed iwth him for well over 6t months straight - until the elderberry syrup. It was a miracle for us. If it helps anyone on here - please consider trying these things. I am not sure if NAC has an affect on all tics or mostly vocal tics - but I've heard it also helps with OCD type behaviors and with people who have trich (the habit of pulling hteir hair out I believe).

I hope this may help someone who reads this. It's nice to have support from others. These things that helped me son - I pray will help some others also. Stay strong. :)

Tony - posted on 10/17/2012

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Hang in there. He will get through it, you both will. He has no other option. I hate when people tell me I'm brave or courageous for my years of battle. I've got no choice but to fight, it's painful but normal for me. It "is" embarressing, especially for an adolecent boy, but even as an adult. I remember getting up at a 5-star resturant, looking down my tie 20 minutes after the onset of ocd at a puddle of drool extending from my tie & retiring to the washroom for a few man tears. I got beat up enough times in school that I took up Tie-Kuan-Do shadow boxing. It helped, um, my disipline, and the bullies left me alone :> A trigger for decades was being touched by anyone or anything, even my own clothes. I would writhe violently on the floor making hissing noises and blinking till I passed out up to six hours later. Yet I still found a very pretty woman who didn't notice the obvious, she has passed on now. But Turrettes does not equal lesser anything. I could go on for weeks with wild stories "normal" lives have missed. Each has left me with so much to learn, share, & to prove. When my father died, I couldn't hug him goodbye. I sat afriad a fly would land on my but couldn't kill the dang thing. In all, I gained an iron sense of humor and a will that does not believe in defeat. There are no limits to the human mind or spirit. As of two years ago I beat the touch trigger, touch wood, I'm still bugged by it, but thus far, I win again! Home schooling is tough with any child; tonnes of work, but one on one your son will eccel in a way only you can understand enough to nurture. But you might be careful not to let his triggers rule you. If they control you, they contol him. Give him space & act like there's no Turrettes, or go away and come back if you're the trigger. If you ignore his difficulty that's one down already, one to go. In short, you're supporting him, and you love him. All you want is his love and his best, that's all he wants of you. Disabilities don't make people special. Anyone who survives them and especially those who support & challenge thenm to rise above them are. That's the best kind of mom. That said, never question if you're doing the right thing, you are.

Robin - posted on 10/03/2012

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I just found your site today. I have an 12 year old who's ticks are driving me crazy. I realize he can't help it and I feel terrible that I just want to go to another room and hide from him. Sometimes he can see the frustration in my face and retreats to his room, this only makes me feel more guilty. I feel like I am letting him down. He he needs my support but I don't really know how to give it to him. He not only has tics but suffers from frequent migraines. This poor little guy just has so much to deal with and he should not have to go through this alone. It is easy to say to ignore the sounds but I seem to hear them more than anyone else. I have come to realize these tics seem to be reserved for me. Aren't I the lucky one. Please tell me how to overcome the guilt I feel and how you have learned to block out the sounds that he can not control.

Christina - posted on 01/15/2014

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Hi, my son is almost 7 and has had tics for over a year. I can't seem to identify the trigger but I'm worried it is something at school. I don't want to over exaggerate the situation but should I discuss this with his teacher? I also noticed that he doesn't have many friends in his class. He is a first grader and he said at recess he plays mostly with 2nd and 3rd graders. He hasn't been invited to one birthday party since school started last year. That is also odd to me. Does anyone have any feedback or suggestions?

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Dawn - posted on 08/04/2015

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Hi, I'm kinda new here and I'm falling apart because my son 7 years old suddenly developed what we believe to be a tic. It is about 10 days now and it seems to have gotten worse. He twitches his head the the side and up and down. It happens all day but sometimes worse than others. I went to a neurologist who told me it could be a motor tic and they are common in children but he is sending me for a few tests to rule out other things.
Last month I found 2 ticks on him but they were not attached. I also had his blood tested ant the lyme came back negative and the doctors said this is not a symptom of lyme. I'm beyond devastated. I can't focus on anything else but him right now.
Anyone have any advice on what this can be or how to handle this.
Tia

Jennifer - posted on 06/24/2014

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Please help!!!!! My 3 year old daughter is developing tics... Touching car door then car seat before she gets in, touching banisters, table, high chair etc then touches her hands to both cheeks. Is stress a reason this starts? I dont know where it came from... How it started but we have gone through MAJOR stress this year... Death of her grandmother, moving 3 times and has been sick all year and had her adenoids removed, started daycare last September amongst other things- I dont want to write too much. I dont know what to do for her and how to make it stop before it gets worse but its been a week now since Ive noticed it and its definitely increasing. Please help me-someone

Shiree - posted on 03/01/2014

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Tony, I just wanted to say that what you said is so meaningful, inspiring, and profound. I am so unbelievably encouraged by your words and the sharing of your own experience, escpecially coming from a man. I guess because I have two small children, both boys, one with chronic vocal and some mild motor tics. He is 7 and has been dealing with these things since about two years ago I would say. He only tried Clonodine once for two weeks per his PED and it didn't help so we stopped. I am and we are very natural in terms of our food, supplements, that kind of thing but I wasn't going to shoot down meds either, if he wanted to try. Now he says that he wants to do no meds, and just concentrate of being active, his diet, and so we are doing that. I struggle like these other moms also and do not really have support. I did reach out to our local Tourette's Assoc. and they sent me a package with a video and lots to read and a small blue bear for my son. :-( I didn't show him anything and don't know if or when I will. He's not truly been diagnosed at least not by a Neurologist. Only a children's psychiatrist mentioned it sounds like Tourettes. I feel lost most days and just try to let him lead me in his needs day by day. We stay clear of dyes, most processed foods, chemicals etc. Keep them both on organic foods, whole food children's vitamin, fish oil, and probiotics. Aside from that they have joined the YMCA, will take swim, and martial arts this spring. Beyond that, I don't know what more to do accept offer him my love, my hugs, and my reassurance that he is bright and lovely, and wonderful just the way he is. When I find myself frustrated by the noises (like one mom mentioned during reading time) I leave the room and get a few minutes of silence and then I go back. It's truly all I can do. Long story short I really feel blessed to have found this site and your amazing post. Thank you so dearly for sharing again Tony and to all the moms and dads out there watching their child/children go through this, I agree...everything will be okay, and our children will thrive, if we continue to fight for them and advocate for them like we do. :-)

MsChoklat - posted on 12/02/2013

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Hi Tina, my son has tics as well and what happens is....when our little ones are at home or at a more comfortable environment, they don't have to worry about the tics because again, they are in a comfortable position but when it come to school or other places, they may not do them but will try and limit them (which is hard) so has not to get teased etc. Try and have patience, its out of their control...it could be worse :-)

K - posted on 11/07/2013

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My daughter (9) has TS and I also have TS, though mine all but disappeared around age 20. I still tic however and remember clearly being her age and what it's like to tic frequently.
Her tics still annoy me sometimes.
I know firsthand what she's going through and it STILL annoys me. Yes, I feel guilty, but it's human nature. I take a small break (even going to get the mail or taking a shower...just alone quiet time) or try to "distract her tics". She tics less if she's focusing on doing something she loves, like reading or singing or drawing. You've probably noticed that your son tics less when he's concentrating, so its a win/win! Encouraging his enthusiasm for a hobby, helping him tic less, and hopefully giving you a little more peace. So I guess its a win/win/win? ;)
No matter what, cut yourself some slack...all us moms are only human. :)

Martina - posted on 11/06/2013

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My son, for the first time spoke up and told the kids what he has. It seemed to have empowered him, even though he could not stop some of the " not so bright" kids from continuing it, other kids have risen up in defense and have even apologized. It makes them feel stronger when they know what they have and learn that they might have Tourette's but Tourette's does not have him. Title of a film too.

Martina - posted on 11/06/2013

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Funny, I thought I could "cure my son's ADHD and his "tics" with cleaning out the water with paying thousands of dollars on a reverse osmosis system for my house, clean out air ducts, install the best heppa air filters, eating organic food, putting him on special diet... Well you get the picture. But the fact is - it's genetic. I would blame myself all the time maybe I exposed him to some horrible toxins? Don't get me wrong I do think that all the horrible cleaners and poor water and air quality do effect people in general especially kids with ADHD and TS, but it is not the cause. If it could only be that simple.

Shekinah - posted on 09/24/2013

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My son is only 3, I thought he had ADHD and OCD because he do this nose wipe face wipe gesture the same way every 5 minutes, and I hadn't noticed it until my brother his uncle recorded him playing a video game the video is 4 minutes long and he does the nose wipe face wipe gesture over 15 times sometimes its 30 seconds apart and other times is back to back.

Mrs Melonie - posted on 08/19/2013

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i have a son whos 13 this year he has ADHD and has tics disorder he tics started at around the age of 8/9 and it does drive you nuts but it ant there fault my son has a lot of tic in hes face and does a thouth clearing noises and sniffing constuntly and head nods its very important that the school nos about the tics disorder because other wise they might think your child being rude , when they are not its there tics i find my sons tic get worse when hes stressed witch he can be a lot due to being at senior school having real learning difficults not be able to read and write properly really frustrates a child my son was dignosed with ADHD when he was 6 and it was the school that gave me imformation bout tics because my son was always blinking and maken funny noises and they say a child that has ADHD is more prone to get tic disorder it can cause anxiety also my son used to do around a lot of tics in every minute but since they changed my sons medication for just hes ADHD to a different one for he ADHD and tics its been a lot better for him

Jenny - posted on 02/13/2013

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Did he had a blood test for food allergen test? Did he has dust allergy symptom like stuffing nose always, If the allergen is something you breathe in from the air, your reaction will most likely affect your eyes, nose and lungs. If it's something you eat, it may affect your mouth, stomach and intestines. Food allergies also can cause skin rashes or even asthma symptoms. If Yes,then he must allergy with the tap water(drink water).The tap water contains microbial cysts, cryptosporidium and giardia.These bacterial are causing major outbreaks across the nation.I think there are the major problems to cause "TICS".
Make sure the water purify or cooked before give to your kids and make sure the juice are made pasteurized.No ice cream.

Robin - posted on 10/17/2012

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Thank you so much for your words of wisdom and encourgment. Since my first post we have begun home school. He said the bulling was more than the could bear so here I am taking on yet another challange, but I am not complaining. I will do anything I can to make life for him as easy as possible. I came to realize Ryan's strength long ago. He is a teriffic artist. He has already had his work in the Baltimore Museum of Art. I must say that was a proud moment for me. I will continue to encourge and support him the best I can and maybe I will eventually be able to block out the noises and twitches he can not control.

Tony - posted on 10/17/2012

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Your neurologist is right. Don't expect him to stop it, he can't. The ticks may change over time & he may (every one's different) be able to mold them to something less obtrusive in small increments with great effort over time by modifying his rituals & convincing his id that as an eg.: 3 quiet hisses are penance enough to stop his mind from forcing even worse or more intense hiccups for wanting to hold them off. The hisses may, month's later be sub modified again to something else or deleted. By doing so he will be less aware of others external negativity and his own anxiety & will gain a small measure of control of his ocd over the years. Some therapists try to use the "tell your brain no" technique. I've even made myself fall to the ground thinking "there stupid, ocd that, I win!" It's a inner tough battle. Learning to hold off ocd for increasing time goes one of two ways, for better or worse. But, for me, I chose to accept what I could not cure. I lead my mind to a better place through meditation & tough love. I have an unusual level of self control and inner concentration. Blipping in and out of the world to please ocd leaves one very adept at retaining short term "where was I?" memory. My temporal cognisance has suffered, but my memory has become by photographic & endemic. The worst thing anyone ever did was to tell me to "Just stop that!". The second worst thing was to try to help me, or cater to the demands of my disorder. I've had ad Turrettes all my life. I'm middle aged with allot of life's scars, have lived a very full life. Your son will too. The human brain is plastic. Hence, the blind make super piano tuners. Watch where your son thrives and excels; always encourage him & his fight can only guide him to a greater destiny.

Vlada - posted on 06/04/2012

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Hi, my son has TS since he was 3, he's 12 now and it' only getting worse. He gets bullied in school a lot. I do not know how to cope with it, I do cry sometimes but that does not help situation of course. He also has allergies which triggers his tics in spring, so the last month of school is like a torture for him . This year he start getting headaches, mostly during school days, I wonder it's because he stressed about situation in school. He says everyone in school says he's weird, even his friends saying that. I'm running out of explanation to him to boost up his self-esteem. And he's going to middle school next year, so I don't know what to expect.. The only thing I'm trying to tell myself - hopefully he will grow out of it but for now I have to be his best psychologist...

Shauna - posted on 05/07/2012

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I too, have a son with Tourettes. Thank you for explaining exactly what life is like for a Mum with a child with that condition! I love my boy so much and there's not a damn thing I can do to keep him still and quiet even if just so I can have a conversation with him without the interruptions! Ditto on the broken heart - so frustrated! What a relief that I can read the posts from other mums. Makes me feel less alone in this whole ordeal. I don't mean to bum anybody out with my ranting, but this is the 1st time I have seen anything this real about Tourettes.Thanks Guys.

Dana - posted on 04/12/2012

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Tina, my son has had TS since he was 5, he is now 11. I felt the same way during the first year. I felt guilty because I know in our case it was hereditary. I also had to learn to tune out the sounds he would make, becuase after a while it could get to be a bit much on my nerves. It took some time, but now I either don't notice them anymore or they just don't bother me. Luckily, he doesn't really have too many vocal tics.
I know it's hard to understand how he can hold it in all day at school then release it all when he gets home. My son does the same thing. He has learned to hold back sometimes or redirect his tics other times. Within 10 minutes of being home from school all hell usually breaks loose. All his teachers say he is an angel at school, which I am thankful for because if it was the other way around that would be even more stressful! I call him my little Jekyll and Hyde :)
I agree with the previous comments that the reason he lets it all out at home is because it is his safe place. Every child needs a safe place. Your doctor is right about the tics, do try to ignore them and never ask him to stop, because you never want him to think there is something wrong with him. Welcome to your new normal ;) I hope you find this community helpful and supportive, we're all going through the same thing. Just remember your are not alone!

Stacia - posted on 03/26/2012

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Tina, my son is 13 and was diagnosed when he was 9 though his symptoms started before then. He also suffers migraines! He has had so many tics I have lost track of the number! Eye blinking, wrist contorting, hand contorting, wrist and hand flapping, punching himself under his chin (yeah that was a fun time), rolling his eyes back in his head, multiple noises, a nervous sounding laugh, face contorting, head shaking, twisting, etc etc. I am use to the tics but I will admit every once in a while there comes one that for whatever reason drives me insane too and I feel major guilt as well. Moms are only human too! The reason he unleashes it at home is because he is in his "safe haven" and knows he is not going to be teased for ticing. Breaks my heart everytime my baby tics but I try not to let him know. Sometimes I have to go in the other room and just cry! BUT I am thankful that he does not have a life threatening condition-that's what I keep telling myself.

Kristen - posted on 03/23/2012

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Sweetlife- I understand your frustration. I get upset and go away to cry sometimes. It overwhelms me because I can't help him like he wants me to. We are moms, all we want to do is protect our children and them to be happy. My son is 8 and has motor tics. I have heard some vocal tics but they don't stick around for long. The tics change ever month or two. This has almost been going on for a year now. My son is also OCD so because of him having tic disorder and OCD the neurologist wants to start him on Meds. Meds make me very nervous. We are starting them over the weekend. That way we can keep in eye on him. I know there is no cure and they just might go away one day or continue. Maybe the Meds will help him sleep and be able to pay attention in class. We are trying to have him not hold in the tics because I notice when he does they get really bad at home. He understands what it is now. We are taking one day at a time.

User - posted on 03/22/2012

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My son is 9 he has been doing it for since he was about 7 or so. First it started with allergies and the doctor put him on some meds. Then he started the tics, the faces and the hands ballings and the neck jerking. I took him back to the doc and asked if it was the meds cause it didnt start till then and the doc rans all these test on him and he said he some kids just get tics and it may go away but he didnt want to put him on meds for the tics cause it would make them worse. We changed the allergy meds anyway cause I just didnt understand and wondered was it a side effect, I even stopped the allery meds to see if it would stop but it never did so I continued the allergy meds and then he started with the throat clearing, and a roaring noise along with all the jerks. The doc saw him again and put him on some ADHD meds cause of some attention problems in school. He went from not learning and making F's to making all A's and B's. Now at age 9 most of the moving tics have stopped, theres only a leg kick jerk every now and then but the high pitch noise he makes. I notice that he can hold it in at school pretty good and when we go out to eat or the movies and shopping but soon as we get home he lets it go. And I dont think he notice it cause he will be looking at tv or playing the xbox and it constantly going. Somethings I feel bad cause I wonder can he really enjoy tv or playing like that, and sometime I just go into my room close the door and cry cause I dont know what to do, and the doc just say he's ok and it may go away. And I get so scared that one day we may be out somewhere and I might caught someone picking on him and I will seriously go off cause I cant see myself standing there letting someone hurt his feelings because of something he cant help. And his 2 older sisters are the same way about him. And we are going to keep going out like we been doing, but when he was doing all the other tics people would just look and when they saw me looking at them very serious they would just turn away. But he is very happy and he's not shame or anything. I talk to him about it to see if he's fine and no whats going on and he do. I just wonder how do he stop sometimes and start back at times, its just still strange to me. But we love him to death and wouldnt trade him for anything else.

Kristen - posted on 03/22/2012

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My heart goes out to you ! My son is 8 - he has tic disorder and OCD. We are starting him on a medication this weekend to see if it helps. I am so nervous to see how it goes. Medication scares me. I was hoping to find moms going through the same thing we are. It is hard to explain to people everything. When I do they still don't understand. :(

Cynthia - posted on 03/13/2012

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((hugs)) It is definitely hard to ignore, especially at first. My son has one he just re-discovered which is an ear piercing high pitched beep - sounds just like an alarm. I physically wince EVERY time he does it! We live in a completely tiled, plaster walled, VERY small house, so it echoes SO much! Keep trying your best. It sounds like you are doing a great job trying to understand him.



Our kids are sometimes able to hold them in. My son doesn't even notice he's doing it, because he has had so much practice at it. This usually causes a rebound effect, where the kids have to "let out" each and every tic they've held in over the day, when they are comfortable. You should feel honored, because he feels comfortable at home.

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