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Original poster

Tics/Tourette’s. Diagnosis? and then what?

61 replies

Profilejacket · 31/10/2019 20:33

DS (7) started having tics in January of this year. They have come and gone a bit but have recently really ramped up again.
They are mainly to do with his face and eyes but also a few neck stretching and arm stretching ones plus a throat clearing one.

I can’t see them disappearing completely by next January which would mean he met the diagnostic criteria for Tourette’s.

My question is-should we get this ‘official’ diagnosis? And then what would we do with it?

We went to the dr when they first started and he was hopeful that ds would grow out of them and gave him a few tips for distracting himself.

I’m also a bit worried about the co morbids-OCD and ADHD. Ds can be very compulsive and is never still so these are also on my radar.

Does anyone have any experience or advice?

OP posts:
Lovetodaydream · 02/02/2021 21:28

Hello, my son developed tics when he was 6, they come and go, and mainly after a strep infection. I was a complete wreck as they started literally overnight. Happy to answer any questions about our experience.

Theonlyoneiknow · 04/02/2021 13:53

Hi All, I was wondering if anyone knew how to differentiate between tics and stimming? DS has ASN and jumps/leaps around A LOT. We will be out walking and he will suddenly leap into the air, skip and hum and completely zone out for a minute or so. He has been doing it for 6 years now (ASN diagnosis was about 4 years ago).

taykitty20 · 04/02/2021 14:20

Not sure re tic and stims; I think they serve diff functions but not sure how to tell by looking....! Lovetodaydream, would love to know how things are now and how you handle it? Thank you.

Lovetodaydream · 06/02/2021 15:08

Hi taykitty20, how are you doing? To be honest, when it started I did not cope well at all. I couldn't eat, was tearful and fearful about what the future held for him. We took him to our local hospital ( we thought they were seizures at one point )who referred us to their neuro team but in the meantime managed to get an appointment with a private neuro within a few days. She was so so helpful. Talking about his recent health, I mentioned a sore throat. He had a blood test that showed recent strep infection that caused the tics. Very common cause apparently but this is not PANDAS. PANDAS is defined by a few different symptoms. She said tics are common, PANDAS is rare. She said to expect them to come and go and if he has a sore throat, straight to the doctors for a 10 day antibiotic course. The tics peaked after about 2 weeks and then faded to barely noticeable. He has had a minor flare up since ( coughing this time around) but again faded. I informed the school, and they are aware if anyone in his class has strep, I pull him out of school. I would say, it does get easier. I was at the end of my tether, i can't explain how I felt, but it rarely crosses my mind now. Please do pm me if you it helps.

tarapinn · 08/02/2021 10:01

My ds started with tics when he was about 5. They come and go and are extremely varied but at aged 19 now, he still gets them. I was hoping he would have grown out of them tbh but unfortunately not.

I will say it has not hindered him at all. He has always had a great group of friends around him, did well at school and is now in his first year at Uni. They don't seem to notice them.

Sometimes I struggled a LOT! I would video him, tell him to stop and comment on them way too much. I cannot stand repetitive noises anyway, so when he had vocal ones, that was hard. The worst are the blowing out of the nose ones when sometimes bogies come out!!

Nowadays, I never, ever comment. He went through very fragile mental health age 14-15yrs, including taking an overdose. I will always wonder why and sometimes blame myself for making him feel shit about the tics when he was 9! I know I am probably being harsh on myself but for those of you with younger dc's, please, please do your best not to comment. I would go to the loo (still do sometimes) or busy myself in another room when it got too bad. Not always though, that would give the game away to him.

He saw a paed neurologist about aged 14 who said they were just chronic motor tics and because they didn't impact his daily life, he was OK at school etc, there was nothing they could do and he would (hopefully) grow out of them. Still waiting....

He is a closed book tbh and doesn't share his feelings or emotions at all with me so I have no idea of the impact of his tics on him now. He has had girlfriends for years (one 3.5yr relationship and the latest has been nearly a year) who adore him.

I do believe though, that they bothered me more than anyone. Maybe it's because we are their mums and we just want them to be happy and have no issues that it bothers us the most. Who knows?

But good luck with it all, especially those who are struggling.

taykitty20 · 08/02/2021 17:20

Wow, thanks for that honest perspective on it all. Can I ask, how did you "make peace" with it all, put aside the anxiety that others would notice (did they notice? was it a big deal?), and sort of move on? I find myself not wanting to spend time with my daughter, which is heartbreaking. And it's something that's for me to work on and control, and of course I will do that, but changing behaviour is one thing and changing feelings is another. At the moment, the tics we have are not objectively bad or loud, but it is the fear that they can head in that direction, and the stomach lurch I feel every time I see it out of the corner of my eye. Thanks to everyone who has shared their experiences.

taykitty20 · 08/02/2021 17:21

lovetodaydream, sounds so hard, but I'm glad they were able to identify a trigger and that you're all doing better now....parenting....my god....

tarapinn · 08/02/2021 20:25

They probably did notice, his friends I mean, but just didn't/don't care. I'm sure I notice it more than others!

Teenage years = a lot of time in bedroom so not so much time spent together which I guess made it easier. Primary years though, I found it much harder but just knew I had to play it down as much as possible.

It is hard though. I do understand Thanks

Lovetodaydream · 10/02/2021 19:18

Taykitty, I was exactly the same. His tics were very noticeable motor tics, not at all subtle ( to put it in context, he couldn't pick up a glass easily). I also found i used to avoid being in the same room as him. Being faced with the tics was just too much. I used to be in the kitchen, make up chores, anything really but at the same time felt so so guilty. Things improved after seeing the neuro. I had answer, more idea of what to expect. Our gp had pretty much dismissed us, said they are common, barely looked at him and this didn't help at all.
Once things had calmed down, I started counselling, i felt I needed better coping strategies.
BTW, I had joined a couple of Facebook groups, one for Pandas and one for tourettes but I found they made me more anxious, a lot of people self diagnosing and offering medical advice, so I left them pretty quickly.

SPURS2019 · 21/03/2021 09:20

Hi could I ask what kinds of tics your son had?

Original poster
Profilejacket · 22/03/2021 20:27

Wow-just coming back to this thread and realising how far we’ve come.
Touch wood we haven’t had any noticeable tics since he had a bad spell when he went back to school after the first lockdown.

I will say that he is still quite hard work in terms of his behaviour-still always in motion and lacking in impulse control!

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