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!

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.

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?

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 You really gained a lot of perspective after going through this for so many years and I really appreciate still reaching out to desperate parents in crisis. I would love to read the study saying that tics tend to improve year after year after the peak. The burning question though is when do you as a parent know id the peak passed or it is yet to come?

Thank you for your answer @mert. You are right in everything you said. I just don’t think I can keep going like this, I need some help in moving forward. My mind is constantly in overdrive trying to solve something that cannot be solved. And I keep looking at my youngest to see if there are other things I missed. Over assess any movement he does to see if it is a tic or not, if there are new ones coming along. And he for sure feels the difference in me. Regarding vocal tics, I don’t know if is that relevant how they are qualified. I think I’ve seen all the common ones: coughing, throat clearing/grunting, tongue click, saliva sucking noise, sniffing, lip noise, air blowing on mouth and an exhaling noise, humming. Not all at once, and only a couple of them are still active and with the exception of the lip noise and coughing he currently does, the rest are pretty random/rare now. Curious thing is that he mentioned yesterday ( we had a discussion about tics because he kept asking his brother why he keeps blinking) is that his brain wants to hear the sound of the lip movement in a particular way - hence the non stop tic movement. And his constant finger fidgeting - he said it feels like he has bread crumbles on them, that is why he keeps moving them. This sounds like some OCD to me, which is similar to how my brother remembers the sensations he had as a child: the need to do the movement in a particular way, and the finger sensations my son described he remembers it identical. To a very small degree, he still cracks his finger joints/has some OCD thing with his fingers that nobody else notices it. But my son also has/had tics that he was not even aware he is doing them so who knows. I do agree about the genetic link, my mother in law said that my husband used to clear his throat constantly and this lasted until he was 8-9 years old but my husband remembers he used to do this in highschool as well (probably less obvious). But both my brother and my husband had a few things going on which were constant, while with my son things feel so fluid, like the tics he has now have nothing to do with the ones from 6 months ago, which is why I am in constant fear to how things will look in the next 6 months. You probably read, like I did, that tics get worse through puberty, but your daughter’s case so far the opposite has happened. Do you think that this is maybe due to the fact that people who participate in these studies tend to be on the more severe end of spectrum, and people who improved or remained mild to moderate are less likely to be part in studies?

Hi all! I finally mustered the courage to post here as well. I’ve read this topic since last year whenever I felt the need for some pozitive vibes. I feel I am living my worst nightmare at this point. My (now) 6 year old started around 4 with some throat clearing which went away in a couple of months. Thought is was medical, like many in the beginning. After turning 5 he started with a humming sound which was non stop. I barely ate for 2-3 months. Then many more came. Like @madimi describes, he rotates through a lot of tics, with 1 predominant and 2-5 “behind”. This pattern is become pretty obvious now. His tics are mostly vocal, motor ones are more subtle (finger fidgeting, lip scratching). Despite having so many, somehow people around him do not notice them that much - probably because he had no facial one so far. Like @mert advises, I noted in a spreadsheet and saw that lately his peak periods are shorter now. So I sort of started to adjust and hope for the best. And adress other issues (behavioural issues, social anxiety, sensory issues) through family counselling. This until 3 days ago when my not even 3 year old started with a hard blink and a grimace. This time I took it really really really hard. He is my sunshine, my happy kid, my hero who overcame a lot in his young life (prematurity, growth restriction, neuromuscular issues during the first year) and despite all of it, he is perfect in every way. Just learned to ride a bike with no training wheels last weekend. He was my refugee when my older sons’s tics are in a waxing phase. I don’t know how to cope with 2 out of 2. I feel this is so unfair. I don’t even dream to hope that they will pass quickly. I know that this is the case for most kids, but his young age and sibling pattern I highly doubt it. No tourette case in our family. My brother did had some mild tics growing up but not at the level of my older son. The fear is overwhelming, he is not even 3 yet and has dealt with so much in his short life, I just feel desolated and heartbroken. Nobody around me understands why I am taking it so hard. I can’t eat, sleep or do anything. When I see him tic I have to literally leave the room. I am in a very much denial phase. I don’t even know precisely why I am writing this message. I just need to let it out without someone telling me to get my act together. My love for my kids is imense and yet here I am hiding away and crying all day in a pillow. What do I do from here?