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?

 

[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?"

 

[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.

 

[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

 

[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.

 

[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.

 

[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.

 

[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.

 

[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!

 

[Parkep]

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

 

[Kate&Lucas]

Sorry your little one is going through this

I was diagnosed last year after spending about 20 years thinking I was just a bit odd 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

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.

 

[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.

 

[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?

 

[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.

 

[Xpecta]

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

 

[pinkstarbinks]

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

 

[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.

 

[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.

 

[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.

 

[Braven05]

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

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.