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

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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?

I have no experience I'm afraid but of it were my DS I'd want the diagnosis. It will help protect him from discrimination in later life

My son has tics which vary and come and go. He's on the spectrum but didn't meet the criteria for a "diagnosis". My doctor said to only worry if they affect his daily life

When they are bad they do affect him. He gets upset that he can’t stop it and the neck stretching one hurts him.
I just dread it getting worse

Give your son magnesium and omega supplements if you don’t already. Cut down on sugar or eliminate completely. CBD oil reduces or eliminates tics in some kids. It can take up to 10 days to work. Buy a good quality 500mg bottle and give up to half a dropper in the morning and evening. The above has greatly reduced my child’s tics. We get none most days unless at times of stress.

DS14 has tics from aged 5-10 on and off. Eye rolling, blinking, shoulder shrugs, mouth opening.

I decided not to do anything about it re GPs etc. as what would they do other than slap a label on it?

They have gone completely. In hindsight I think they were stress related (divorce)

I

I can hear the anxiety about it in your post and I really feel for you.
Personally, I’d take the GP out of the equation for now, it seems to be causing more anxiety with the ‘deadline’

He’s ok, he’s healthy in every way. Concentrate on building general wellbeing - good food, great hobbies, lots of sleep and tlc

Hi - my eldest son has tics from around age 7 and each one would last around 6 - 9 months ish. Hard to remember now. I took him to the GP and he said likely to be Tourette's but just see how it develops and don't make a big deal out of it.

He is 15 now and has had the odd repeat event as a teenager but they are far less obvious - really only to him and me. He is however now being assessed for ADHD. Mainly because he has big exams coming up and he loses focus very easily and I think he could be helped. I haven't pushed for a formal diagnosis before as he was managing in life.

The one thing I would say is don't worry. My son is a happy boy with a ton of friends and no one would be aware there is anything different. He is however a bit hyper, impulsive, fidgety and can't concentrate well at all - but he will pass his exams. He is also very anxious so I try to use strategies to help with that and learn to let some things go. Hopefully your son will slowly grow out of the more obvious tics... my sons started to calm down around age 11 / 12

Just one last thing...you’d be amazed how few people even notice it, if you / he are worried about that.
I sometimes used to mention it to friends and without fail they’d reply “I haven’t noticed” 🤷‍♀️

I agree that lots of people don’t notice (although I notice them in in lots of other children and people now I’m alert to them!)
I worry about the eye rolling one being perceived as rude but I don’t tend to mention it to other people and rarely talk about it with ds unless he brings it up. He knows he’s doing them though.

Hi there; not much help but just to say I'm in the same boat with my 5 year old and have been pretty stressed about it; the throat clearing one drives me batty. Most of the threads about this sort of stuff are quite old (often with no indication of how things went for the opwhich I hope means well enough that the person stopped writing!) so it's nice to have a newer one. I find it very, very hard not to comment on the tics but have been told that's the number one thing we can do to help. My daughter probably does meet the criteria, and we have a few members in our family with mild tics. I had an eye one as a kidonly for a few months but seems there's a strong genetic component with these things . I don't think I will pursue a formal diagnosis as it seems treatment (including doing nothing...) is the same regardless of what the label is. I think if I had to explain it to school (hasn't been an issue thus far and fingers crossed never will be) I would do so regardless of what I call it. If it were still ongoing when she's older, I may let her decide what she wants to say and what she wants to call it. I admit the label thing is my "stuff" and the fear around the word tourettes, and perhaps if more people owned it and used the label without hesitation it would be a helpful thing, though I don't know if I have it in me at the moment. I'm still struggling with the whole thing. Sorry for the ramble--just to say I get it and would be happy to keep in touch and discuss anything that's helpful, etc, either on this thread or through pm with anyone who wishes.

...one more thing...seems they changed the diagnostic criteriaif I'm understanding correctlyso that any break in tics no longer matters; what in the past would've been a few episode of transient tics would now qualify for tourettes diagnosis I think. It seems like this would mean that LOADS of people would technically qualify for diagnosis. There's something about this I find comforting...though ultimately none of it really matters, we all just want our kids to be ok :(

I feel exactly the same. I did discuss it with school last year and they were reassuring saying that they saw quite a few kids that age have them and that they usually went after a while.
It’s the worry that it might get worse and it’s hard seeing him upset by them.

Definitely; for me, it's really brought out the oh, ok, we're just not in control at all are we, with the whole parenting thing.... It came out of left field despite the family history. I tell myself everyone has something at some point, but it still twists at my heart. The one thing I've noticed seems to help is adequate sleep (both for her and for me; the saddest part for me is that I struggle to watch it and I feel it's hurting our relationship...and I suppose that's the part that can be worked on/is on me to fix). My little one has said she doesn't want any help for it, but from what I understand if it's bugging them/they want help habit reversal is a good med-free option?

re co-morbids...I've found myself watching my kid like a deranged person and attributing any time she's tidy and ordered to OCD, etc. For me at least it can be a really blurred line between noticing a real problem that needs addressing and seeing things out of fear/construing behaviour that's within "normal" range to fit what I'm most afraid of. I would say trust your gut...xx

My son (7) was diagnosed with Tourette Syndrome about a month ago, after over 3 years of worsening symptoms.

Getting the diagnosis has changed nothing as CAHMS in my area do not offer any support with TS as it's neurological and not mental health. I know from a Facebook UK forum for people with Tourette syndrome and parents of children with the condition that some CAHMS services do.

We have had to engage with a private neurologist, as we were only referred to an NHS one after 2 years of tics and we're still waiting for that appointment one year later.

We had to engage with private therapist for comprehensive behaviour intervention in tics therapy as again, it's not offered in our NHS trust.

Today we saw a therapist (again, at our own cost) regarding emotional disregulation as our son has been increasingly getting angry. Told this can happen with TS and by the way doesn't your son struggle to concentrate, has anyone mention ADHD to you?

So, diagnosed or not we have found absolutely no difference in help because there just hasn't been any.

Be prepared for it to get worse though, and hopefully get better. Though it doesn't always.

We are trying to secure good professionals now who we can learn coping strategies for our son from which he can carry through his whole life just in case he's one of the unlucky ones.

We also tried magnesium supplement, zinc supplements, CBD oil and they did nothing. Again, from the FB forum we did hear some people have success so they are worth a try.

The best we can do is acknowledge these tics, understand they are involuntary even when you do feel that premonitory urge (and this is good as it can be helpful if you do try CBIT) and that yes it's a difference but it doesn't make you less worthy of a person.

Sorry for long ramble, TS has quite a presence in our every day life.

@SebandAlice could you tell me what CBD oil you buy? It seems to be a minefield buying the stuff! My 12 year old has tics and I’d be interested in trying CBD but it seems to be aimed at 18+.

I have tried magnesium but not with much consistency. I might give it a concerted try.

That’s not very hopeful re nhs provision . How do you find private treatment?

If you email the help desk at Tourette's action and request a list of neurologists or other professionals who have indicated they see Tourette syndrome patients they will send you their list. It has contact details of each professional. Many will do CBIT over videolink as there is poor availability the further you live from London.

You can apparently ask your gp or neurologist in your area to be referred to out of area services but I think it depends on their mood

@Whyisitsodifficult

Ion 500 mg peppermint flavour

frogsbreath, did you have any success with the CBIT?

..success as measured either in tic reduction or overall improved feelings in your ds :) Do his tics bug him/do others comment?

Tics are very VERY common especially at your DSs age and commoner in boys.

He does not meet the criteria for Tourette’s as he doesn’t have verbal tics as well as the motor.

Honestly you need to relax- he won’t be the only one in his class.
They will come and go with varying degrees of intensity and if you just chill and encourage him to do the same about them then he will be fine.

He will more likely than not grow out of it. Very few adults continue with tics.

Honestly please know how common this is in young boys. Ask any primary teacher.

You can try relaxation techniques and kids
meditation but most of all reassure him it’s just like an itch or blinking and it’s his body’s way of releasing a bit of energy and perfectly safe and ok.

Don’t show him your fear of ridicule or anxiety.

Just one of those childhood things in the vast majority of kids.

Thanks. I am chilled with him about it and will try and relax myself!
But my understanding was that the throat clearing one is a vocal tic?
Maybe I am over thinking/reading too much.

Throat clearing is so common that’s one paediatricians don’t class it as a true vocal tic

I do think you may be over thinking it if I may be honest
It’s genuinely super common at this age, almost always comes and goes for a while and gradually disappears with age

Given there isn’t a clear pathway for diagnosis or treatment I wouldn’t get sucked in to pursuing anything unless he is olde roe significantly struggling with aspects of the tics that you can’t help with.

Look at relaxation, any physical aids that can help like weighted blankets or chew or fiddle toys etc. Accept it as part of him right now and reassure him he isn’t alone and it’s just like a type of blink or swallow and no one thinks he is doing it on purpose or worries about it and just try to ignore as much as you can.

I’ve been where you are with two of my kids and it’s only now when I look back at old recordings I recall how many tics they had at some points!
Both now tic free happy adults.

I keep hearing it's so common yet it seems we're the only ones in our social circle with this issue :( Some of it may be that I'm obviously more tuned into my kids than others but even so....I do notice subtle ones in adults now though, sometimes.