So worried, daughter has tics

[Miruna]

Hi! How is everybody doing? We are so and so: my oldest dealt with a spike with starting school (big transition from kinder-garden) but I’ve noticed that the recent tics (since May) don’t tend to stay for long, and he keeps going back to the initial ones (throat clearing, sniffing, coughing, which are triggered by colds as well). He has been better but also worse, so for him they are truly waxing and waning, though even when waning they are not fully gone. It has been a while though since I would say his tic frequency is low. It is pretty high but the tics per se are mild and don’t cause any issue for him so far. He settled well in school and I hope with the  anxiety levels in check he will be ok.

Youngest though - after blinking subsided in June (around 2 months after we noticed him), it came back with for a week now (gradually, now extremely frequent). He had small habits/tics as well during this time though, but nothing I would have noticed in other circumstances, that could pass as toddler quirks and were infrequent. Tongue movements (appearing purposeful), lip biting, face/nose touching, stuff like that. Nothing compared to this agresive fast blinking that is virtually non stop now. I try to take it better this time and remind myself that it is temporary, that it will subside as it did the first time. We are careful with screen time for both kids, try to ensure a heathy diet (without making it a bit deal especially at parties and events, we don’t want them to feel excluded), ensure enough sleep, be there for them and hope for the best. My husband is taking it far better than I am. I think I am still not accepting this as something to deal with long term, especially with both kids. 
I hope everyone here on this topic is doing great and the lack of activity is due to a lack of tic activity  

[mert]

Hi, 

We had a similar pattern. When waned it was never completely gone and some times it come back with more tics, increased frequency. But slowly intensity of the tics lowered. The movements got less intense even if the frequency or number of tics were the same. We still had peaks where intensity also spiked though, so it wasn’t like a continuous downward trend. It’s what make it difficult for us anyway. 
 

After 6.5 years (I think tics started before that but weren’t easly detectable since she was too young) , only now I can say I can’t feel the tics. 4-5 months ago, they were there, I’d see them once a while. Now I don’t feel’em. They could be still there, they are probably there, but I am not trying to  actively find then. If I can not casually detect them no one will abd it won’t effect here life. That’s good enough for me. 
 

Btw, I’ve seen tics on several other children, including my brothers son, and on all cases the grand trend was downwards (with a lot of peaks). 
 

I am hoping/knowing that this will be the case for everyone on the thread. 

[Miruna]

As always, Mert, your answers are a calming reassurance. I have to actively remind myself that peaks will pass as well, because in period with high intensity I tend to excessively worry that this is our new normal. I’ve seen first hand with my oldest that even a seemingly “non-stop” tic will eventually subside, but I find myself exhausted in watching and worrying for both kids all the time.
I am very glad to hear that 6,5 years in, you would still say the general trend is towards improvement. It gives me hope and perspective when things are not ideal. I am still only 1,5 years in with my oldest and, to be completely fair, I can’t say things are clearly worse or clearly better. It really fluctuates with him. The only clear pattern is that new tics have not been sticky, and he tends to always come back to his initial ones (that wax and wanes). He is still very young though, 6,5 years old. I know that we have a lot of unknown territory in front. And that is even scarier with my 3,3 years old with the current frequency of this blinking tic. Did you ever had tics with your daughter that you felt were very very frequent, even for short periods of time?

[mert]

At 1.5 years, I wasn’t also able to recognize a downward trend as peaks were pretty high and I was always worried like you, lost more than 20 lbs back to my high school weight. 
 

Slowly things started changing, around 3.5 years into it. And I was able to register a clear downward trend by year 4-5 but still with peaks. 
 

Eye blinking is least harmful and most repetitive tic with highest frequency. We didn’t have it much (only couple of times) but my brothers son had it a lot. (Last month I stayed with them and had spent lots of time, all was well the little guy) 

However we did have far worse looking ones like head movements. I’d take eye blinking instead of them any moment. They also went away. 
 

At the first years a new tic would usually stay 6 weeks (there exceptions) , you would first see it 1-2 times out of, than it would increase gradually , peak, stay at peak and than rapidly decline. However we had some tics stay for months.

Later cycle started to be a bit quicker , like 3-4 weeks on average and peak of a tic was milder on average. This was noticable at around year 3-4.  
 

As we had written here many tikes. Comorbid issues are more important. Tics tend to go down one way or the other. I’ve also noticed (or they told me) some of my adult friends have tics, almost unnoticeable and they only surface when they are anxious. 

[Miruna]

I see no comorbidity in my youngest so far. He seems to be more typical than his brother, but he is still young.
Oldest does struggle with some aspects mainly socially (The iceberg picture with motor and vocal tics was like a punch in the gut) but nothing that would make us overly worried at this point. He made huge progress in the last year, adapted smoothly in the school system, made a new friend, participates during classes (his teacher praised him for his knowledge on various topics). At home his angry outbursts subsided, our last big meltdown was in the beginning of the summer. We worked in the last year with behaviour specialists and worked a lot on pozitive moments/connecting better. He grew and matured a lot. He is an anxious kid, but is not diagnosed with anxiety (we had that ruled out). Should anything come up, we have our radar on. Typing this I can hear his grunt/throat clear coupled with 2-3 short sniffles almost non-stop. At least these are the tics I am most accustomed with. I crave for a waning period, it’s been 5 months since the frequency stayed pretty high despre the tics rotating in various cycles. Still I am the one who notices them the most. 

[mert]

‘disorders’ are a wide spectrum. And there are naturally cut ofF’s for one to be diagnosed to having a disorder. 
 

if your son is below the cutoff (even if he was mildly above the cut off) of anxiety disorder , that I think means he will get better with age. Usually children who are more ‘aware’ and ‘intelligent’ can be anxious in earlier ages as their ability to think and worry is more advanced than their ability to control their feelings/mood. And I think that this will also help with the tics significantly. 
 

It does take time. In our case it took close to 7 years and I can not tell you that it’s over, we can have a peak tomorrow. 

[Miruna]

You really spotted very accurately the issue. He is more “aware” and has a more mature thinking (without being necessarily gifted), which brings sometimes issues in terms of dealing emotionally. For example, he began to ask questions about Santa being immortal since before he was 4, trying to understand why we die and he doesn’t. He got really anxious at times when he understood the ideea that we all die in the end. He was the only kid in his class 2 years ago who, instead of being happy when Santa came with presents at the Christmas celebrations and go to him, he came to us looking very suspicious asking why Santa looks different than last year (he was 4 at that time). The list can go on. This type of introspect profile, a very good observer and being a total introvert sometimes comes with difficulties, and I understand that tics do fit in this profile in a way. 
He also exhibits sometimes a “power” to change some of his tics if that makes sense. The ones who are harmful, such as a recent movement with his hand in his nose which led to scabs and injuries. We talked about it and he found a way to relieve the itch with a grimace instead of taking his hand to the nose. The grimace was short lived and almost gone now. Then he started with lip licking/biting and when the lips started to get red and hurt him, he alone tried to do a different movement (massaging his cheeks or closing his eyes and doing the tic in his head). With his approval I remind him to be careful with the lips and he does a “competing” response. This does not work though with simple sudden tics such as throat clearing, sniffing, or more ingrained tics and I let him be, as long as the tics are not potentially harmful. I try to find joy in the fact that despite his young age, he starts to show some signs that, when necessary, has the capacity to exercise a form of control over his tics. I hope that in time, if they don’t fade away, at least he will be able to work on making them manageable. I really want to thank you Mert for sharing your experience and knowledge. I find myself reading this topic often when I feel I need some perspective and reassurance for the future. I honestly believe that your daughter’s tic experience being one towards improvement is due to your support and understanding. I wish you and your daughter all the best!

 

[mert]

Most of the disorders we are talking about boils down to 'urge' control, whether it's in the form of a physical movement , or a need for stimulation or thought or a will to perform a choreography. 

Some researches state that ability to self control the urge , like being able to stop for extended amounts of time is a sign for better recovery, which I believe and it was one of the things I tested with my daughter, if she was able to stop a repeated movement at her will. 

My daughter was no different,  when I was talking about Santa, at 3 years she calmly asked me if I knew that she knew Santa is not real (to cut the crap short) 

I think challenges, sports or academic help them a lot to gain confidence, be ahead of the pack (so they feel confident of themselves) and also keep them busy. There is no way to prove it but gymnastics I think helped us a lot and my brothers ons does archery (both at national levels now, accidentally as we were just trying to keep them busy and add new skills that would help them tackle challanges) I think this gymnastic thing also kept me and my wife a bit busier and involved which also helped us keep it together too.