# Anyone have any experience with Tourette's?



## Braven05

I've had a strong feeling for the past year or so that my daughter, who turned 5 in August, may have Tourette's Syndrome. It was a lot more worrisome and scary for me when I first came to realization. Now, I know it's not the end of the world and we can work through it, but I also want to have some support.

I mentioned the tics that she has when they first appeared last winter and the ped pretty much brushed me off. I've mentioned them again, at least twice, still being told that tics are normal for children of this age. 

She's been cycling through different tics since last January. Now she has one that is affecting her in school. It's a very loud cough and I'm fairly certain it's not due to allergies or cold, because she crosses her arms over her chest and does the cough repeatedly. 

She's also on allergy meds every night and I tried giving her mucinex to see if that would clear up what she said she was feeling "stuck" in her chest. 

Today she told me that at school her teacher made her move off of the rug with the rest of the kids and go sit in a chair towards the back of the classroom because of her coughing. I'm not upset with the teacher because I know that the coughing is disruptive. I'm just upset because she told me some other kids laughed at her and it made her feel bad.

She also has had increasingly awful behavior at home and I don't know if this is a part of that. She doesn't listen well, she does things she's not supposed to, she throws big temper tantrums when she doesn't get her way. All stuff I thought would start to improve once she matured some. It's gotten worse. She tells me she can't control herself. But she's great in school, no complaints from her teacher at all. 

I'm just frustrated that the ped isn't taking me seriously and I don't know what we do to potentially get her diagnosed and what the treatment might be. 

Anyone have any experience with this? :wacko:


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## SarahBear

How direct have you been with the pediatrician? Have you tried asking for an assessment? I would just state that you'd like an assessment and they'll ask you questions, but should be able to tell you how and where to get an assessment. If they try to brush you off, just be a broken record "I want an assessment. How and where do I get her assessed?"


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## Parkep

Im sorry I dont have experience with it. But I do know that at that age my girls went thru a lot of difficulty with listening, temper tantrums etc. It tends to calm down, we stuck with our rules and time outs. It took a bit but they finally realized it wasnt going to work. I think they start to mimic other kids behaviour and see what they can get away with. 

As far as your ped the PP is right and if that doesnt work. I would get a second opinion. Put your foot down, its disrupting her school and effecting her. 
Also I would speak with her teacher, let her know what you think is going on. She may have some insight as well, and maybe where you can get some help.


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## pinkstarbinks

Agree with other posters, speaking to the school. Our middle one has tics too, it's been over 12 months and is both vocal and physical so I feel your concern


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## sabby52

My son has tics, they seem to change over time, he has a vocal tic which did really annoy one of his teachers, she was honest with me about it being annoying and I totally agreed with her but we both understood he couldnt help it so he never got punished for it, if it got bad they had a little signal and when she used the signal Dec knew he was doing it and would stop, kids with tics arent aware they are doing them so being punished for them is unacceptable. My son also has physical tics. We are on the waiting list for ADHD and Autism, if you feel she need an assessment then you really need to push it, we first noticed my sons quirks and behaviour when he was 18 months old, he was assessed at a behavioural clinic but nothing became of it, now at 9 years old we are on the long road of assessments :( I would definitely look into it sooner rather than later.


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## Braven05

Thanks for your thoughts and encouragement ladies. I'm going to make an appointment soon and will push to have an assessmen/see a neurologist. I feel strongly it's at least a tic disorder. It's been more vocal tics than physical ones but there have been physical ones. I've been keeping good notes each time one occurs.

As for her teacher, I did mention the tics when school started but maybe we need to talk further about it and make a plan. I don't think her teacher was punishing her necessarily but she was isolating her because it was distracting to the other kids, which I get. I just don't want her to feel bad.

The behavior is just, sometimes I feel so upset about it. We are consistent with rules/consequences. I've tried incentives, punishments, nothing helps. She is so smart and loving and funny but lately she's just temper tantrum after temper tantrum and pushing buttons constantly. It's so frustrating.


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## Parkep

I think that's a great plan

As far as behaviour have you sat down and asked her if something is bothering her? Tell her how her behaviour has changed so much etc and you are wondering if anything is bothering her at home or at school? Sometimes they have things going on that they dont talk about, bully, etc.


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## Braven05

I have...she either just tells me "I don't know" or tells me that she wants to be good but doesn't know how. She behaves just fine in school so I'm at a loss with her sometimes. She's very emotional and doesn't like to be told no.


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## Braven05

In case anyone who posted on this was wondering at all, my daughter was diagnosed with Tourette syndrome 2 weeks ago by a neurologist. My intuition was right all along. Its been a roller coaster of emotions since having it confirmed, that's for sure!


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## Parkep

I am so glad you have answers though. I cant imagine the feelings you are going thru. Huge hugs.


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## Kate&Lucas

Sorry your little one is going through this :hugs:

I was diagnosed last year after spending about 20 years thinking I was just a bit odd :haha: My tics exacerbated suddenly about 18 months ago though, before that they weren't really noticeable. Luckily she'll more than likely grow out of it.

You've prob been given advice and there's some good support groups on Facebook depending where you are but in my experience tics are worse when I'm tired, after trying to suppress them for a time and (worst of all) when people pay attention to them. Tics _are_ disruptive but they're 100% not her fault so I'd speak to the teacher about maybe finding other ways to deal with it in a more inclusive way.

Sorry I don't have any advice on the behaviours. I know it's a co-morb of TS but as an adult I'm either not affected or my family are scared to bring it up :lol:

Hopefully you'e sorted a lot of the issues out now. I've been looking out for signs in Lucas but *touch wood* he's not showing any so far.


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## Braven05

Thanks guys. I have hope that understanding what is going on with her so early (she's only 5 years old) and having her in therapy, beginning on some behavioral therapy will help her in the long run.

The unknown and the unpredictability of the condition is what makes me so nervous. It's been pretty hard to come to the realization that this is something that we will all be dealing with for the rest of our lives. 

I'm here to support her but it's pretty hard sometimes, especially as I'm dealing with my own baggage and trying to heal and move on from the possibility of ever having another child. I guess all we can do is our best.


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## Xpecta

I'm sorry to hear about your own hardships. That makes things a lot harder. Your own emotions make everything so much harder. 

My son has Tourettes syndrome as well. He hasn't been officially diagnosed. 

How are things going for you guys? And with her in school?


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## Braven05

So far, things are going okay. It's almost like we went through the stages of grief, ya know? Denial, anger, acceptance. We're kind of at the acceptance place now. School is almost over here so, while I gave them some informational sheets about dealing with Tourettes in the classroom, I don't think much is being done. I think they're just dealing with it. Which is fine. 

She's changing schools next year so we'll make a more comprehensive plan for next year.


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## Xpecta

That's good that you're on top of it like that! How is your daughter dealing with it?


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## pinkstarbinks

Following our 4 year old is a long term ticker glad you got answers :flower:


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## Braven05

My daughter is pretty okay with it. She says they don't bother her at all. They're fairly mild, most days. Today, not so much but even the days that it's more intense, it doesn't seem to bother her.

We're just taking it day by day at the moment. I know it's bound to get more frustrating for her as she gets older, particularly when other kids notice/say things to her about her tics.

Last night before bed she said to me, mommy I don't think my teacher knows I have Tourette syndrome. I said, mommy told her about it, why do you think she doesn't know? She said, because she asks me to stop doing my "things."

So that's a little frustrating.


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## Parkep

Oh no! I would be talking to her teacher, and if that doesnt help the principal. She needs support, I understand that it can be frustrating for the teacher but maybe she needs more understanding.


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## Kate&Lucas

Oh gosh that's really concerning. Yes she's going to cause a distraction but she literally can't stop it just because she's told. Suppressing tics can cause them to get worse too and cause tic fits.
Do you have a Tourettes charity where you are? In the UK we have Tourettes Action and I believe they give talks and supply information for schools. Her teacher definitely needs some sort of training.


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## Braven05

Luckily I don't think she's actually listening to her teacher when she asks her to stop :haha:

I printed out these sheets so that they would have information and understand what was going on with her, but I'm pretty sure the teacher just passed them on to the school nurse instead of reading them. 

Good news is that there's less than a month left of school. We are transferring her to a new charter school in the Fall which will have smaller class sizes and an established resource department. 

I'm not sure right now if she needs a 504 plan or IEP. We will see how next year goes, as she'll be in a much better environment. I know we're probably looking at an adhd diagnosis at some point, which will probably help with getting her an education plan. 

For now, I think she's probably okay. I don't think she's getting punished or anything for her tics, I think her teacher just doesn't understand that she has no control over them. :shrug:


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## ClairAye

I'm glad you got a diagnosis! I hope your daughter is doing okay. Do you mind me asking who you saw that ended up in getting a disgnosis? As in did you ask your GP to see Neurology or? My son was 5 last week and for over a year has had tics, it started with blinking but is now that plus lip smacking, coughing, sharp inhaling, opening his mouth very wide and a less-occasional random scream. I'm going to go back to the GP but even though he is fantastic I'm worried he'll think I am thinking OTT. Thanks. :flower:


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## Braven05

Hey ClairAye,

I had first mentioned the tics to her pediatrician when they first started. They kind of blew me off at that point, told me it happens at this age, etc. I was willing to ride it out for a bit but even then my gut told me it wasn't normal.

When they didn't go away after about 6 months I brought it up again and got the same answer. From my research I had done I knew we were going to have to wait a year but I wanted to make sure it was documented.

When we got to the year mark I brought it up again and pushed to look into it further, making sure to mention any effect it had in school and home behavior. 

From there, the pediatrician referred her to a neurologist and a clinical psychologist.

I would say go with your gut. If you feel like something else is going on with him, don't worry about whether the doctor thinks you're overreacting or whatever. Push for further evaluation.

I've heard a lot of stories about people getting brushed off and not getting diagnoses until their children are 10, 11, 12.

I don't know if it will make a huge difference but I've got to think that knowing early on and making a plan with school, the psychologist, etc., has got to be a good thing, ya know?

We can also work on the comorbid issues caused by Tourettes, which are often harder to deal with than the tics.

Good luck to you! Keep me updated.


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## sabby52

My son was diagnosed with T.S in March this year, over the past 6 months we have become aware of a lot of other problems with him, he has started suffering anxiety attacks and has turned into a very nervous, anxious child, he was also diagnosed with Attentional difficulties and has social communication concerns :( He has an appointment with Camhs next month and has a review ADHD appointment in January as she didnt have enough concerns to diagnose adhd but had too many concerns to discharge him, he is also on the waiting list for an Autism assessment. 
I find that I am worrying more about his diagnosis than he is, he said his tics dont bother him and if anyone comments on them he just says "they are my tics" I love that he is so innocent about it all but I really worry that if they get worse it could really affect him when he goes to secondary school, I have read that up to 50% of people diagnosed with T.S as a child, their symptons can greatly improve in the late teenage years, so fingers crossed. My sons tics are quite mild at the moment and some wouldnt even be noticed by other people, apart from the vocal ones. 
I understand how worrying this time is for you as I am totally in the same boat, I am learning as I go. My sons school have been brilliant with him, I sent them all the information the pediatrician gave us and they have been wonderful. Has your daughter had an MRI?? My son had his just before christmas and thankfully it was clear, his pediatrician wouldnt make a diagnosis until the MRI came back as there is lots of other neurological problems that can cause tics.


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## Braven05

Sabby,

My daughter didn't have an MRI, she was just evaluated by a neurologist. When she did the exam I guess she was looking for signs of anything else that could be causing the tics and she did not find anything to make her suspect something else. 

There are no learning disabilities, cognitive delays, etc., for her so aside from doing bloodwork to rule out PANDAS and thyroid issues, she just did a clinical diagnosis using history and observation. 

I'm pretty comfortable with that for now, although I can see how if some of those other things were present, I'd want to have an MRI for sure. 

I suspect we'll have an adhd, ocd, and possibly an odd diagnosis in our future. She has some ocd tendencies now, although they don't really interfere with anything. She definitely has hyperactivity but not really attention deficit. She's doing great in school so far so as long as she keeps that up, I'll be happy.

Are you considering meds at all?


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## sabby52

Braven05 said:


> Sabby,
> 
> My daughter didn't have an MRI, she was just evaluated by a neurologist. When she did the exam I guess she was looking for signs of anything else that could be causing the tics and she did not find anything to make her suspect something else.
> 
> There are no learning disabilities, cognitive delays, etc., for her so aside from doing bloodwork to rule out PANDAS and thyroid issues, she just did a clinical diagnosis using history and observation.
> 
> I'm pretty comfortable with that for now, although I can see how if some of those other things were present, I'd want to have an MRI for sure.
> 
> I suspect we'll have an adhd, ocd, and possibly an odd diagnosis in our future. She has some ocd tendencies now, although they don't really interfere with anything. She definitely has hyperactivity but not really attention deficit. She's doing great in school so far so as long as she keeps that up, I'll be happy.
> 
> Are you considering meds at all?

I have done a lot of research and at the moment we have decided not to medicate, the majority of medications used for tourette's are anti-psychotic medications and are associated with significant potential side effects. 
But at the moment his tics are quite mild, if they ever increase and bother him or disrupt his day then I would have to reconsider.


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## Braven05

Same here, everything I've read about the meds makes me scared to even consider. Don't really want my 5 year old on anti psychotics unless she needs them. 
It's so odd that the only medication for this disorder is actually for something completely unrelated.

Unless her tics and comorbids start to affect her in school, we won't be going that route. Neurologist recommended cognitive behavioral therapy and later habit reversal training.


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## ClairAye

Braven05 said:


> Hey ClairAye,
> 
> I had first mentioned the tics to her pediatrician when they first started. They kind of blew me off at that point, told me it happens at this age, etc. I was willing to ride it out for a bit but even then my gut told me it wasn't normal.
> 
> When they didn't go away after about 6 months I brought it up again and got the same answer. From my research I had done I knew we were going to have to wait a year but I wanted to make sure it was documented.
> 
> When we got to the year mark I brought it up again and pushed to look into it further, making sure to mention any effect it had in school and home behavior.
> 
> From there, the pediatrician referred her to a neurologist and a clinical psychologist.
> 
> I would say go with your gut. If you feel like something else is going on with him, don't worry about whether the doctor thinks you're overreacting or whatever. Push for further evaluation.
> 
> I've heard a lot of stories about people getting brushed off and not getting diagnoses until their children are 10, 11, 12.
> 
> I don't know if it will make a huge difference but I've got to think that knowing early on and making a plan with school, the psychologist, etc., has got to be a good thing, ya know?
> 
> We can also work on the comorbid issues caused by Tourettes, which are often harder to deal with than the tics.
> 
> Good luck to you! Keep me updated.

Thank you so much! He has the doctor tomorrow morning and I am feeling more positive as the doctor is amazing one. I have four videos on average lasting 2 minutes of him doing a constant mix of tics. I first took him to this doctor about it over a year ago and more recently in March so hopefully this time we can get it looked into.


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## hypnorm

,y son is 11 and has had tics on and off for years, doctors have never been much help.
He went through cycles of head twitch, opening jaw, straightening arms, or shrugging shoulders and throat learning coughing. Certainly mad worse when he was anxious.
he struggles to concentrate in class, and is often in trouble for being 'disruptive' he doesn't have many friends and is classes as annoying. He often doesnt understand personal space. or see hazards. 
school haven't come up with any help and doctors have said try a parenting course... which my husband won't consider.
The tics have eased over time but the concentration issues still remain


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## Braven05

Hypnorm...sounds like tourettes to me. It often comes with behavioral issues. I'd see if you can get a evaluation with a neurologist. Then maybe you can get better support in school for him.


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## sabby52

hypnorm said:


> ,y son is 11 and has had tics on and off for years, doctors have never been much help.
> He went through cycles of head twitch, opening jaw, straightening arms, or shrugging shoulders and throat learning coughing. Certainly mad worse when he was anxious.
> he struggles to concentrate in class, and is often in trouble for being 'disruptive' he doesn't have many friends and is classes as annoying. He often doesnt understand personal space. or see hazards.
> school haven't come up with any help and doctors have said try a parenting course... which my husband won't consider.
> The tics have eased over time but the concentration issues still remain

I could have wrote this, sounds so much like my son, my sons friends always say he is annoying, he doesnt understand personal space, he has tics (diagnosed with tourette's ), his concentration isnt too bad but he can disrupt others because he keeps needing to move around and talk. He has been assessed for ADHD but they want to re-assess him in 10 months time, he has also been referred for an Autism assessment as they think he might be high functioning autistic. I would make an appointment with your G.P and ask for some referrals to be made, my son was seen and assessed in he ADHD clinic withing 12 months, I know the Autism assessment will take a lot longer but at least he is on the waiting list. He has also been referred to camhs which we got an appointment for within a month and he is being seen next month.


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## pinkstarbinks

Hey ladies can I hijack this thread for your opinions on if this is another tic or not? When he's shy and embarrassed he pokes his tongue out. Do you think I should be holding him accountable (am as it stands) or could this be a new tic? Thanks ladies, also, is anyone's child beginning school in sept?


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## Braven05

Pink, tics definitely increase in times of stress but I guess it's hard to tell. Have you tried asking him why he's doing it? Maybe don't suggest that it's a tic but just ask why he's doing it. My 5 year old can tell me if something she's doing is a tic.

My daughter is going into 1st grade in the fall and starting at a new school. I'm a bit anxious but I'll do what I did when she started kindergarten, send a note with information about her and her tics/behaviors for the teacher.


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## sabby52

pinkstarbinks said:


> Hey ladies can I hijack this thread for your opinions on if this is another tic or not? When he's shy and embarrassed he pokes his tongue out. Do you think I should be holding him accountable (am as it stands) or could this be a new tic? Thanks ladies, also, is anyone's child beginning school in sept?

My son has several tics that get worse if he is embarrassed or anxious, one of them is shrugging his shoulders (which looks very rude when people are talking to him) at first I told him of then I realised it was a tic, I realised it was a tic because it got worse when he thought I was angry with him which made him anxious. Also when he is anxious his eyes move very, very quickly from side to side, the first time this tic started it freaked me out so I now warn anyone that will be with him for a lenght of time about the eye movements and shoulder shrugging. Maybe just mention it to his new teacher :flower:


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## pinkstarbinks

He'll say it's if a person looks scary mostly


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