Can complex tics be transient?

[RickButler]

Hello all

I’m new to the forum, thank you for having me.

I’m Dad to a 6yr old boy in London, UK, who has developed a tic disorder over the last few weeks. As we’ve become aware of it, we’ve also realised that he has most likely ‘ticced’ mildly in the past couple of years (throat clearing for a few weeks, which went and a kind of nose pinching, which comes and goes) but we just assumed it was nervous energy I suppose.

Over the last week we’ve noticed very pronounced eye rolling/darting, accompanied by neck movements and the return of the throat clearing. These episodes are definitely prompted and made worse by watching TV. There are some other movements which we suspect may be tics, but we’re finding it hard to distinguish between what are tics and what could be considered ‘regular’ 6 yr old behaviour. For example, he’s energetic and sometimes spins around, but I see spinning is also considered a complex motor tic. He also sometimes tries to touch his Mum’s boobs, but similarly I know kids of this age often ‘push the boundaries’ in this area as well (lots of kids at his school will talk about boobies and willies and see what they can get away with when playing around, for example!). However, as these occur alongside clear tics, I’m thinking it might be too much of a coincidence.

I’ve been reading a few websites that set out the difference between transient tics, chronic tics and TS, as well as simple and complex motor and vocal tics. The criteria for Transient Tics as I understand it is ‘Single or multiple motor and/or vocal tics’ that are present for less than a year. What the definitions don’t seem to explain, is whether the presence of the complex tics (the spinning, the touching) are more likely to point towards TS.

What I’m asking is, can complex tics be transient as well? Could the spinning and touching go away in the same way that throat clearing and blinking seems to? Just because some of the tics are complex, does it automatically mean TS?

Whilst by no means seeking a diagnosis here (we’ve been referred to a specialist through our DR) I suppose, like many here, we’re clinging to the hope that his tics may be transient, or at least mild if it is TS. We know some of his tics are complex, but we don’t know if they can be transient as well, as definitions don’t seem to state this.

Any advice would be appreciated. Any stories or evidence of complex transient tics would be welcomed as well! However, we know that we’re just going to have to take each day as it comes, and give our son all the love and support he needs.

Thanks in advance.

[JenS]

Hi Rick, I have been having the EXACT same question! We recently saw the neurologist for our just turned 7 year old sons tics. He has eye blinking grunting humming neck stretching plus a few others. These all started all of a sudden. He has had an arm raising thing he's done for about two years but we never thought of it as a tic, more of his way of showing excitement and controlled vs spontaneous. When I showed a video of this to the dr combined with eye blinking he said it looked like a complex tic. Everything I read, like you, said nothing about this with being transient. The dr said it still could be and gave an example of his own son having a complex tic. I still question it and think we may be faced with TS though. One thing I read about TS vs transient was that TS will typically have a spreading of tics, for example eye blinking to neck stretching. I am just devastated and overwhelmed with the "watch and wait" period we are in now. I am brand new to this forum, so maybe some of the veteran members can weigh in here.

[RickButler]

Hi Jen

 

Yes it's tortuous at the moment, wondering what each new day brings. I'd say my son probably has about 6 tics on the go at the moment. None of them are particularly severe, and some could be disguised as 'fidgety kid behaviour', so might not stand out. The neck and eye movements, the spinning and touching would be most recognised as tics, the throat clearing and nose pinching less so. The analogy that came to me is that it feels like we're on a long air flight somewhere and the plane is being battered by turbulence (the tics). Sometimes the turbulence is severe and scary as , the next one might be mild and not feel too bad. But we don't know how long the journey is, where we are going to, or how much turbulence we'll experience along the way.

[Tiger]

Hi rick your description is almost exactly the same as my sons. We're 3 year into it now and it was very difficult at first for us. We had no support from NHS and still dont. After I pushed and pushed, t he GP. did the norm of referring us based on other symptoms I described: a sudden on set of anxiety and emotional upset along with regression, buy the time we got our first appointment my son was also ticcing with a head flick to the right.

 

Its great that you've got a referral to a neurologist??

 

The paediatrician that just kept saying ' I'm not concerned about the tic' and dismissed my concerns especially when I mention PANdas, he just scoffed.

Over the years the tics changed, my list is similar to yours.

Every time we waited 3 months for appointments only for the dr. to say 'oh just ignor the tics, its very common in children'.

after 1.5 years of appointments my son was discharged. No diagnosis given. I wasnt bothered really as at the time I didnt think a diagnosis would be much help. Its was the investigative support I needed.

I myself swade from thinking TS or transient but gut feeling is its not TS, or a transient tic disorder even though 'it' presents like one. I suspect that all a dr would do is say it is either. Strange that he didnt make a formal diagnosis even though my son met the criteria....more than a year + motor + vocal tics.

We have no family history and there are more symptoms that match PANDAS, so I'm continuing on this route.

 

The dr. refused to refer to him to a neurologist despite observing the tics in clinic, my footage and extensive accounts (diary) of the tics. He would not do specific blood tests, only 1 standard routine test on the first visit.

 

The lack of support we've received has forced me to take matters in to my own hands & I have tackled all of my sons symptoms with non - conventional methods. His tics have reduced significantly. He's not free of them, they still pop up now and then but only I would notice. I dont think they'll ever go completely until the root cause is investigated and treated.

 

I'm not saying its that same for your lad but everything sounds very similar have you read up about Pandas or Lyme? has he been ill recently? We spotted a strong correlation between illness and the tics coming up again.

My son has never talked to me about the tics nor I with him based on the drs advice. However, my son is very aware that he suffers from something physically, he now has lots of sensory type tics and issues and becomes very frustrated by his body not doing what he wants it to do. It's like he notices a difference between the periods he doesn't and does tic but he's not sure what it is.

 

I hope you can find the help you need. To be honest I found mine from other parents with experience rather than the drs.

 

keep in touch, tiger.

[JenS]

Rick- I like the plane ride analogy. I just wish we knew what the weather was like ahead of time. Watch and wait is so hard.

 

Tiger- Thank you for sharing. Can I ask if your sons tics are noticeable? Do other kids notice and it bother your son? I guess I'm wondering if mild tics can stay mild. Everything I read says to expect a peak severity at about 10 years old. Is that about your sons age? Also, what have you used to treat on your own? I've bought Sheila's book, along with magnesium and tic tamer (although I'm having trouble getting my son to take them).

 

I'm so sorry for those of you that have trouble seeing a neurologist. Here in the states our pediatrician immediately referred us to one. Unfortunately the neurologist, even though he was very nice, didn't give a diagnosis and gave very little direction where to go from here. Or even when to go back. I feel like we are on our own in watching our son helplessly tic all day.

[kc_litgal]

Hello Rick, In my experience all tics can wax and wane and be transient, even the complex ones. It seems that every 6 weeks to three months, new tics develop and others disappear. Yes, they can even cycle around again. That being said, tics often come with awful tag along behaviors,

such as anxiety or OCD. Your son may be having some compulsive behaviors, that may not be tics. I would suggest watching and see how it progresses, and then look for an evaluation.

Blessings, Kelly

[Sheila]

Rick, just checking in to see how things are going. I hope some answers have emerged.

 

Yes, complex tics can be transient. The labels are a bit arbitrary.

 

The national Tourette association wrote in a published guide "The difference between Tourette syndrome and other tic syndromes may be no more than semantic especially since recent genetic evidence links Tourette syndrome with multiple and transient tics of childhood and can only be defined in retrospect." The labels don't really tell you much. But of course we wish your child's tics to go away quickly.

 

The main thing is to focus on the current symptoms and try to find causes for them, along with ways to calm your boy's nervous system. Have you learned more or had different experiences since writing?

 

Do you need help finding an integrative physician in the UK?

[Tiger]

JenS Sorry I missed you questions earlier.

he's 8 now.

Nope so far no one else has commented on his tics and he doesnt seem bothered by them.

The head flick one is back at the moment. Broke my heart to see it - as he'd been 99% tic free for over 8months! Its so frustrating because just when you thought you'd mastered and tamed all the triggers something random comes along and trashes all of the boundaries - you have no idea which of the previously known trigger set it off or if it was something new!!

Anyway I've tentatively tried to ask him subtly about the tics. Its so hard because you dont want to draw attention to them or to make him feel self conscious about it. But what he says is either 'its itchy' when referring to the feeling on his forehead or 'it feels like my hair is always touching my forehead' I never comment really other than saying 'oh I see' or ' i understand' again hard to know what to say as you don't want to reinforce or be little anything and make him feel odd- ugh!

His tics are mainly wiping the forehead, raising and frowning eyebrows or flick head to the right side or a combination of all. Its almost as if he has a sensory memory that causes a muscle reflex memory which he cant regulate. An invisible fringe that bothers his skin so his body takes over to deal with it. The tic itself doesn't seem to bother him but the other things he experiences do - anxiety, poor muscle tone, low self- esteem, food phobias, constant mantra of "i can't' and sensory issues: tags and certain textures etc. These really cause him to meltdown.

 

i suppest he has PANDAS or PANS so I try to avoid mixing with people when they're poorly - difficult at school. i try my best to boost his immune system but he's a fussy eater - I'd go as far to say he suffers from food avoidance.

Treatment so far to date: He's off dairy and gluten - low sugar, low soya. This definitely saw a reduction in tics.

Liquid magnesium everyday. Magnesium salts in bath every other day, movement therapy, homeopathy, massage with lavender essential oil.

 

I'm dreading the high school years as I just dont know if this is all tourettes like - something that is part of him or PANDAS like - something that is happening to him because of something else. feel like I am shooting in the dark really in terms of treatment I just go with what ever seems to work.

Let me know how you're getting on.

Tiger x