Hi @madimi I’ve read through your posts and as others have said, you aren’t alone. My 8 year old daughter has had tics since June 2020. We’ve went through many different types. In fact, re-reading my posts on these forums actually reminded me of some of them that I had forgotten about as they haven’t been around for a while now. Her tics I would say now are on the mild end, she does the occasional left eye wink, and some nose scrunching. The one that I notice she does a lot is scratching – she just scratches everywhere. Now I’m not sure how much of a tic it is vs her dry skin as we live in Canada, and she has a history of eczema. Her vocal tics, I haven’t really noticed for quite some time now. And this is how it all started for us – sniffing that went on for 5 months non-stop – like every 5 seconds. It was crazy and sent me into a spiral.
Last summer was the worst for me as that was when we hit the 1 year mark of tics and I knew that meant the tourettes diagnosis. I had to seek counselling for myself, which really helped. I found someone who actually does CBIT and works with children with tics, so knew she would understand me and what I was going through. I also joined many Tourette themed facebook sites, which frankly did not help and sent me into a deeper spiral. I’ve learned that the people who are having milder symptoms and just getting on with life are not the ones posting on those websites. I’ve learned no two people with Tourette’s are the same, so where this is going to go for my daughter I can’t predict, and I am one of those people who try to forecast the future and think the worst, so through therapy I’ve stopped doing that.
I have to say that not once has any of my daughter’s tics bothered her, not once has she said anything to me about them, and not once has anyone at school said anything to her about them. I continue to hope that they stay mild and unnoticeable except to me who is still always on the look out for any changes! We tried gluten free for a few months and I saw no difference and she was miserable doing it, so I stopped, I reduce gluten but haven’t eliminated it anymore. I give her magnesium and B vitamins. To be honest I’m not sure if it helps.
Through this, I identified that my older daughter age 12 has had tics since she was about 7. Now that I know more about it, I think back through her childhood and the early days I remember she had a cough that lasted months after a bout with a cold. We took her to a pediatrician and they didn’t find anything wrong and said it would go away – which it did after about 7 months. I also remember for about 2 years she was always humming probably from age 8-10. It bothered her classmates, her teacher talked to me about it, they would tell her to stop and she wouldn’t. I remember having discussion after discussion with her that she needs to stop and when I realized it was a tic after the fact I felt horrible about it. She still continues to have vocal tics – mainly throat clearing. And in January I noticed her first ever vocal tic – eye rolling. It only lasted 2 weeks and hasn’t reappeared.
So, my advice to you:
· Stay off facebook sites – stick to medical papers
· Ignore the tics and don’t call them out for your child
· Seek counselling for yourself – this was hard for me to recognize that I needed it, but I’m so glad I did it
· There was one podcast I started listening too – Tic Talk – two guys from Ottawa talk about their Tourette’s experience and have guests. They haven’t had a new podcast in a couple of months. But what I liked about it was that they both had different journeys – one wasn’t diagnosed until age 19; the other was diagnosed maybe around 10 and from what he tells, had it pretty severely. While both still have symptoms of it today, they are doing great, don’t let it rule their lives, have relationships and one has kids. I was so appreciative to hear their stories.
· While it’s great to hear what others have done and the outcome for them, know yours could be completely different – better or worse, you just can’t predict what will happen
Take care!