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Original poster

My son's tics are driving me up the wall!! Please help

65 replies

Howlongtillbedtime · 15/09/2018 19:25

He is in yr 8
He is teeth slacking
He is lip smacking

He is driving me fucking bonkers.

It has been going on for months / years on and off

Nobody has any bright ideas.
I have done all the talking to him about how he feels.(He doesn't have a clue)
I have done all the ignoring the tics (it makes no sodding difference)

I have asked for help for years ( he isn't suicidal so sod off)

We had input from the school nurse (not actually qualified in mental health)
She thought he wasn't engaging with the service ( four meetings over 8 months and two nurses and they were pissed off he wouldn't spill his inner feelings.)

I love him and want to help him but all of my ideas have failed.

Please help !!!

OP posts:
Spaceman67 · 15/09/2018 23:33

Magnesium works well for tics.

zzzzz · 15/09/2018 23:38

This reply has been deleted

Message withdrawn at poster's request.

thinkfast · 15/09/2018 23:54

Magnesium has worked wonders for my ds7's tics and stutter. Didn't take any on holiday with us this summer and the tics came back. Gone away after 3 days back home with good quality magnesium supplement

thinkfast · 15/09/2018 23:56

I was also advised LOTS of sleep for ds in a very dark room. Apparently if the room is too light in can mean you don't fall into the deepest sleep

SeaToSki · 16/09/2018 00:03

I find lavender essential oil helps a little with my dc. Just reduces the quantity, doesnt eliminate them. Also substituting another movement, so a fidget toy in a pocket, tapping fingers on knee or toes on floor. You would have to work with him on it to find something that would work, but was less obtrusive to those around him (eg kids in the classroom) so he doesnt worry about standing out etc.

Stupomax · 16/09/2018 05:15

Two of my three children had tics which they have grown out of - my youngest is now 13. They were infuriating and I sympathise with other parents dealing with them.

We didn't seek professional help at the time, but if we were going to it would probably have been from an occupational therapist. We're in the US so our route to getting help is pretty different and I can't really help there.

Snorfig · 16/09/2018 07:55

Just a positive story for those parents tearing their hair out:
I had appalling tics from aged 4 until early 20s. By A Levels they were so bad I had to sit in a side room for my exams. Constant throat clearing, checking my toes hadn’t come off inside my shoes, checking I could get my chin into my chest so I didn’t have meningitis, checking all 10 of my earrings were in place, that I didn’t have a fontinelle... i cannot begin to describe how exhausting and pointless it was. And comical in hindsight.
I am anxious and obsessive in adult life but I’m otherwise socially acceptable - I work in a highly professional environment with public speaking etc, and manage to be credible. I don’t have any useful advice and dread my daughters developing these traits!

NooNooHead · 16/09/2018 08:08

I have an involuntary movement disorder called tardive dyskinesia that is sometimes caused by the antipsychotic drugs they can use to control things like Tourette’s and tics, so I don’t think they are often recommended unless it is a last resort.

My movements are involuntary as opposed to ‘un’voluntary tics, and they include grimacing and lip smacking too. I think they are all caused by the same part of the brain (the basal ganglia I think..?!) I find my movements very embarrassing to be honest, and I generally try to suppress or hide them as much as I can, or pretend they are part of a ‘normal’ movement and that I am just having a reaction to something that had irritated me / was in my eye etc (so it looks like it is a more natural movement- not sure how convincing it looks though!)

Sympathies to your son OP - I know how irritating these movements can be. If your son isn’t bothered by them, then that is great. I wish I could feel less self-conscious about mine...

NooNooHead · 16/09/2018 08:12

My movements get much worse with stress and when I am feeling anxious and tired, and I agree with others that he will probably grow out of them eventually. I’m not going to ever get any respite from mine though unfortunately as mine was caused by drug induced brain damage so is permanent / incurable... 😢

PerverseConverse · 16/09/2018 08:19

Does he have significant traits of ASD/ADD? My daughter has had a blink tic for years that gets worse when tired or worried. She really struggles with organisation and is socially inappropriate at times. Looking further into it she is probably on the spectrum and scores strongly for ADD. She's been referred by the GP for assessment. You've mentioned the food texture issues and done other things that suggest he might be in the spectrum. Go back to your GP once you've had a good read around and write down everything, absolutely everything, you think he struggles with. Hope you get some help for him.

Original poster
Howlongtillbedtime · 16/09/2018 08:55

Thank you to all of you for sharing your stories. It is so hard to watch him suffer with this.
I don't think I would tick enough boxes for an ADD/ASD diagnosis. He does have some traits but he is also very able socially and I think his traits are possibly more of an OCD type (he also has intrusive thoughts)has a referral in a couple of weeks for a Youth emotional support assessment and we are really hoping that will help signpost some other services for him.

We feel we have been fobbed off for years and the school nurses have been out of their depth but other referrals have just been impossible to get.

OP posts:
HermioneWeasley · 16/09/2018 09:02

Tic disorders are dopamine based, as are ADHD and OCD, hence high co-morbidities.

My son has had them since he was two. Also issues with compulsiveness and textures, but not significant enough for a diagnosis.

We got a referral to a paediatric neurologist who confirmed diagnosis, and whose only suggestion was drugs (no way!). He begrudgingly referred us to a child psychologist because I’d read about habit reversal training. She was brilliant, they discussed different approaches and he enjoyed his sessions. Tics are still there but they are less intrusive.

Good luck - you have to be persistent. Remember he can’t help it.

Original poster
Howlongtillbedtime · 16/09/2018 09:18

Thank you Hermione the neurologist thing has cropped up a couple of times . I think that is definitely something I need to look into.

I promise that he doesn't know it drives me up the wall. The biggest thing is obviously how much he is suffering with it. They have always been an issue but they have come and gone. Now they seem to be hanging around and all the usual things that help are not working.

OP posts:
Original poster
Howlongtillbedtime · 16/09/2018 09:23

We were supposed to have an appointment with the child physcologist months ago which a had waited months for and just before it happened she left. I was then told it would take months before they were in a position to offer us another appointment.

The plan is to see what happens with this next assessment and then look into paying privately. We can't really afford to do this but I am running out of hope with the NHS. The funding just isn't there.

OP posts:
HermioneWeasley · 16/09/2018 10:05

I’m so sorry - I know what it’s like to see them suffering. At one point my sons’s vocal tics were so bad he was ticking in between each word and he was so frustrated (which of course just makes it worse)

DogStrummer · 16/09/2018 10:33

Reading this thread with interest. Our 8 year old DS has had tics for 3 years now. They came on after an extremely painful/traumatic medical experience he had, although that could be a coincidence I suppose. His identical twin doesn't get tics.

Even though he has completely recovered now, the tics come and go. At the moment, I hardly notice them. In a few weeks though, they will come back to the extent that they are quite severe. His behaviour seems to deteriorate when the tics are at their worst too.

Magnesium supplements aren't something we've tried. Will give those a go and report back if we notice any improvement.

amusedbush · 16/09/2018 10:47

I’ve had ticks since I was little and like pp, I managed to make them more ‘normal’ but they are still there. I was diagnosed with OCD when I was 20.

I have lots of compulsions, intrusive thoughts and still some ticks, along with things you mention about your son like satisfying numbers on the clock, patterns and repetitions. My OCD has nothing to do with cleanliness, sadly BlushGrin

amusedbush · 16/09/2018 12:48

Ffs, TICS. I’ve not had ticks since I was little 😂

🐜🐜🐜

HermioneWeasley · 16/09/2018 13:00

DS says that any form of distraction helped him, and he found mindfulness helpful

chinam · 16/09/2018 13:50

Thanks for starting this thread. Good to know we are not alone. My son has vocal tics. His are definitely anxiety driven.

mrswhiplington · 16/09/2018 15:09

I've had tics when I was very young. They started around the age your son is now. Throwing my head back, rubbing my ankles together. I used to stop in the middle of the road to rub them.Shock

They faded away on their own, but sometimes when I am stressed I feel the urge to do something. Blinking rapidly etc. I try to control it with deep breathing, relaxation etc. I also take magnesium.

DaisyDreaming · 16/09/2018 15:27

I know tics are very different to sensory seeking but when I saw you say he used to have gum, would having something to chew help (I was going to say chew toy but I mean those aimed at people with autism rather than dogs!). I know a boy with asd and touretttes who has chewellery, a very discrete black necklace that he chews when needed. I have no idea if that would help with the teeth tics or not?

moostermum · 16/09/2018 15:49

My 5 year old DS also clears his throat 1 million times a day which drives me mad. Not done it all summer but back again now back at school.

TheThirdOfHerName · 16/09/2018 15:56

All four of my children had tics during the pre-teen years, sometimes for months at a time. Dinnertime became like tic bingo. Anxiety, ADD, ASD and dyspraxia all run in our family, but I don't know whether the tics are related to any of those.

Thankfully none of them still have tics now.

The one I found hardest to tolerate was DD's throat-clearing. It was so bad in Y6 that she had to take her SATs in a smaller room, so as not to put the other children off.

TheThirdOfHerName · 16/09/2018 16:00

And the combination of a vocal tic in one child and misophonia in another is not conducive to family harmony.