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?

There is another boy in DS’s class who has had them for a few years now. I spoke to his mum when ds’s appeared and she said she’d been concerned to begin with but she didn’t really notice them any more.

Ds’s are really bad when he’s watching TV but I don’t know if that means I should stop him watching tv or whether to just let him get on with it and maybe it will get them out of his system a bit?

My kiddo's gets bad with tv alsodunno if it's the actual tv or just that she's relaxing and letting it all go. I worry if I make taking things away a thing it'll upset the apple cart more. If it's an issue when she's older I wonder that she'll be more willing to try things to helpdiet, tv reduction etc. I've not talked to anyone about it really but do catch people noticing on occasion :(

Have totally been here. Our DC developed tics about the age of 5. All the symptoms above mentioned included. We visited a specialist in London who was willing to try something new and placed DC on a trial of antibiotics based on some research carried out in this area. I have copied from an article I found with info on this.

It is said, these symptoms can be caused by a recent streptococcal infection. This course of action worked for us. Greatly reduced symptoms, in some cases, removing the most noticeable. We also changed foods. Reduced sugars and went all organic. DC is tics free today and has been since before their 6th birthday.

Hope this info helps x

*PANDASNETWORK.ORG
_Two studies reviewed....US national health insurance samples have suggested that children with OCD, tic disorder, or TS were more likely to have had a streptococcal infection in the 3 months or year before the onset of neuropsychiatric symptoms. The risk was higher in children with multiple streptococcal infections within a 1 year period.

Does Antibiotic Treatment Suppress Symptoms and Does Prophylaxis Prevent Recurrences? Anecdotes have suggested that the treatment of "PANDAS" with unspecified does of a variety of antibiotics improves symptoms and in multiple cases immediately, at the initial treatment. This finding, however, has never been the subject of a clinical trial._*

There are many other articles on this. Am sure a google search will bring them all up!

My son has mainly verbal tics and has just been referred to CAHMS: I've just sort of ignored them until now but the latest one is repetition of a swear word which has not gone down well as you can imagine...

I think it's anxiety related - we've had a lot of change this year which has seen a real spike in tics.

I'd like to try to cannabis oil and I'll look into the Omeg and Mag too - thanks for this thread

I think ds’s are partly anxiety related too and I have massive guilt that a few days before the first ones started I lost my temper with him and shouted at him in a horrible way. We’d had a lot going on too and the latest round have coincided with him being shattered from school and excited for half term etc.
I’m tempted by the CBd but don’t think DH would go for it.

My 8 year old DS has started with this recently, mainly in the evening when he's watching TV.
He has Autism so I kind of assumed it was linked to that.

profilejacket I also feel really bad about times I've lost my temper and sometimes wonder if it's triggered something....but I think if every temper lost in a household triggered these issues literally everyone in the world would be tic-ing away....

My DD6 has been suffering on and off with tics for the last 19months, they last a few weeks then go a few months then come back, at first it was vocal, throat clearing every few seconds, then became various motor tics too, I was terrified of Pandas diagnosis as it all started 6 weeks after she had Chicken Pox.. The motor tics went after first bout which lasted about 10 weeks. She has only had bouts of the vocal tic since, has 2 vocal tics currently, she has recently lost a few teeth, not sure if any connection there. I think we are all in the exact same boat with our worries for their future.

After a solid run of not mentioning the tics at all, I completely unleashed on my kid this morning. I told her I know she can't help it but that I think she does it extra loud to wind me up (I dunno that this isn't true, but even so). And a whole string of other awful stuff tic related and not. I sent her to school looking so (understandably) sad and my heart still hurts thinking about it; I'm doing real damage here. I'm not expecting anyone to tell me it's ok--it's hands down not ok. It was truly unacceptable. Does anyone have any advice on how to continue to not only be around your kid but be the parent they deserve when you can't take the noises anymore (because they make you sad and angry on top of it's just plain annoying) and when you just desperately miss the time before this was an issue? I know there are people out there dealing with far more serious things and I keep trying to tell myself my child is intelligent, she's kind, she's beautiful, she's in other ways healthy. This is not bothering her (unless she's too proud to say). But it doesn't dull the ache for the time before.

My ds had quite severe tics from before age 7. Once we were referred to paediatrician. He was diagnosed with chronic tic disorder. They all but stopped after 11 months, so he didn't meet the criteria.

If you'd spoken to me then I would have said I couldn't see them clearing up, but they did. He's 10 now.

Oh @taykitty20 (your name makes me wonder if you're near me actually!)

It can be hard; I know I have snapped before. The constant throat clearing that meant nobody could hear any of the movie we were trying to watch really set me off one day.

Honestly though, I mostly tune it out. Sometimes I tune in and it makes me sad for him, but I'm mostly not cross about it (or particularly fussed about it at all really tbh).

I think there are times too when DS adds to the drama a wee bit; he's told me twice this week that he has a new tic (sticking his tongue out) and his friends are getting annoyed with him doing it because they think he's being rude; but I have to point out that he hasn't done it one single time at home and so either it's not really a tic and he's doing it on purpose, or it's a tic at such an early stage that he could try to not let it become a habit.

Do you think maybe motor tics alone are more likely to disappear? We had a playdate tonight and there my daughter was grunting away and the other mom (who doesn't know) said, ohhhh is there a lion in here? I'm so exhausted by this being an issue and feel terrible that I feel embarrassed by it; I'm sure I gave my mother plenty to feel embarrassed about, and honestly I remember the feeling of a parent being ashamed of you--it's really awful and I would hate for my kids to feel that. I wanted to pursue flexi schooling to spend more time with my dd but honestly now I just can't picture being around the grunting all day. If I'm this annoyed, I really worry that friends and potential partners or employers in future won't stand it. I dread becoming whispered about, "that's the kid with...." I'm just really not sure what to do with myself. My husband doesn't get annoyed; he says her dummy (a diff issue!) annoys him way more. But he's not around it all day. Apologies in advance if this is offensive to anyone; that isn't my intent at all. Just feeling desperate, want to be better, and hoping for guidance. BTW I'm in London :)

Taykitty20 what age is your daughter? I do think ignoring them is the way to go, they subconsciously do it more when any attention is brought to them, I've defo found that with my DD. But don't get me wrong, my DD has 2 vocal tics and sometimes they give me THE RAGE, I literally have to leave the room, I never say anything to her, I know it's not her fault, she picks up on it sometimes and I can see the hurt in her face. Regarding motor tics, she had them for about 10 weeks last year but they went, just vocal ones now

Also, have any of you read up on Pans or Pandas, tics are a symptom

For my son at least, they come and go. Mostly they'll last a few weeks or months then something else will replace it as the main one. Some are more annoying than others!

DS developed tics around the age of 2. They were very pronounced by a similar age to your DS. He’s now 14 and has outgrown them.

He had vocal and physical tics. At times they were very pronounced - sometimes vocal tic-ing in between each word, causing immense frustration. He was worse when very tired or very over excited. They disappeared when he was “in flow” - concentrating but relaxed. He was diagnosed with “tic syndrome”.

He saw a paediatric neurologist who couldn’t suggest anything other than haloperidol (strong anti psychotic) which I refused, and on my request he grudging gave us a referral to a child psychologist (I had heard of habit reversal training but he had not), but told me “if there was a silver bucket they’d be doing it” (twat).

She was brilliant and gave him some coping/distracting mechanisms.

As I say, they have drifted away, I think the psychological support helped but I suspect he would have outgrown them anyway.

Tic syndromes are dopamine related, hence the co morbidity with OCD and ADHD which are also mediated by dopamine. One way to counterbalance dopamine levels is to increase oxytocin, which is released (among other things) by physical contact with loved ones. When he was very wound up hugging seemed to help level him out.

Good luck to you and your DS

Taykitty-sounds really hard. For all the tics worry and upset me they don’t actually annoy me (there are many other things about ds that drive me to distraction so I’m definitely not a saint!)
It’s always awkward when someone notices /comments-we had a sports leader think ds was pretending to be a fish once and joined in. Ds just looked puzzled and I think he clicked pretty quickly.

We do tend to ignore them completely but on the occasion that we have spoken with ds about them he his remarkably articulate and insightful. It might be worth a chat with your ds-begin with an apology and explain that you know it isn’t her fault. You could try some basic habit replacement if she understands.

My understanding was that even if it is PANDAS the treatment doesn't really differ? Is it worth testing for it even though I think there's a genetic component (probably why I feel angry and guilty...). My dd is 5. How do you guys explain to other people, if at all? She's refused habit reversal, I think that's what set me off, as well as the idea that if it's not bugging her I need to leave it...which of course makes perfect sense but also we all have to live in the house... I should be happy that she doesn't care/isn't embarrassed, but I wonder if she actually is as she's quite proud/wouldn't necessarily admit to being embarrassed. The face stuff doesn't bother me, its the noises. I think the annoyance comes from fear but also it's just plain an annoying noise--how do you tune it out?? I notice when she's not tic-ing as much I'm a totally different person, and I can't let something that's not really in our control dictate the rest of our lives....Hermione I think I remember you from some of the older threads, nice to hear things have/can settle! Thank you all for your responses, it really helps to be able to vent.

Anyone have any more pointers on how not to lose it at my kid, and not to feel on edge in your home? I'm trying to remember there's more to life (and my kid) than this, but the constant grunting sets my teeth on edge. I honestly struggle to be around her.

Sorry to hear you’re still going through a bad patch. My dd has had a bad cough for the last week or so and that has grated on my nerves enough so I can imagine constant grunting must be hard.
I can only suggest ear plugs or some sort of relaxing breathing to try to distract you a bit.

Things have calmed down a little here with DS. Still doing a lot of blinking but it’s not as noticeable as some of his other ones. And the throat clearing has disappeared for now touch wood.

Could you ask your dd to try something like a swallow or a yawn when she feels the need to grunt?

Yeah, I need to just walk away/control myself/work on it, but it makes me sad that I have to if that makes sense? Suddenly everyday stuff sets everyone on edge. Glad to hear things calmed down for you guys! How long had the throat clearing been going on? Maybe there's hope it'll die down here...x

Hi @isitxmasyet can I just say thankyou for you truly calming messages. I have read your messages a few times now when I get a little irrational about my 7 year old sons tics. I find it really helpful u speak from experience and are very reassuring. My son has had tics now for 8 months. Various tics both motor and vocal. I only mentioned them to him when I first noticed as knewnotjing about them. Since then not mentioned it to him at all based on GPs advice. We r just relaxing with it, only occasionally do i get upset, reading up that mainly affects boys at least age and is very common. We notice tics are worse when tired or anxious (when doing homework lol). He was tic free for 2 months but came back. But again we are told normal as tics wax and wane. Could I ask @isitxmasyet how long did your children have tics for? Or is it a distant memory?

I hope everyone is doing well in these crazy times. Can I ask how things are going for people on the tic front? Those of you who answered, even if it passed, can I ask how school dealt with it, if at all?

My five year old son has started with tics. Over the last day it has been non stop facial grimace. It’s heartbreaking. From the moment he wakes up till the minute he falls asleep he’s doing this weird facial tic/ grimace and stretching his fingers. He says he can’t help it he has to do it. He’s a very bright sensitive boy. I don’t know what to as it’s just suddenly got so bad. Anyone else’s little one tic constantly? X

Still dealing with it all. :( Anyone else?