Anyone have any experience with Tourette's?

[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.

 

[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.

 

[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.

 

[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?

 

[sabby52]

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.

 

[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.

 

[ClairAye]

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.

 

[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

 

[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.

 

[sabby52]

,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.

 

[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?

 

[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.

 

[sabby52]

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

 

[pinkstarbinks]

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