silver77

@Deanit how are things going? My daughter continues to have tics, but I find them to be fairly mild in that they aren't distracting to her day to day life, people haven't said anything to her about them and they don't bother her. Currently she has a left eye wink, bottom lip stretch, slight stomach contraction that makes her hunch her shoulders over ever so slightly, her left big toe is constantly moving and a throat clearing/grunting sound (very hard to describe and I haven't been able to mimic the sound myself). I hope you are doing well!

Hi @madimi - sorry to hear about the eye rolling tic. As I mentioned in previous posts my 12 year old started with that in January, after a couple of weeks it went away, then re-appeared in April, now it's gone again - the occasional multiple blink of the eyes, but nothing like what it was (for now). Her throat clearing tic however is another story! My 8 year old still has frequent tics, but have stayed fairly "mild". She is still doing a left eye wink, bottom lip stretch, slight stomach contraction, and I've noticed her left big toe is constantly moving. She has a throat clear/snort type sound she makes, it's really hard to describe, but that's the worse of all of them right now. I try to keep positive, some days are better than others. She doesn't seem bothered by them. The only time recently she's mentioned any of her tics to me was yesterday when she fell off her scooter and scraped her chin. Unfortunately her bottom lip stretch impacts the chin with the movement a bit, so she was feeling sorry for herself about that tic as it was hurting her scrape, but today she hasn't mentioned a word about it. I do see symptoms of anxiety in her and I find it's getting worse, so I am going to be looking into some therapy to help with that, as from what I've read anxiety can also make tics worse, so perhaps if we can help manage that, her tics may get better.

Hi @madimi - there must be something in the air! After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones. She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds. She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds. I've had two meltdowns privately over this. Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart. I do hide all my emotions from her, and it still continues not to bother her. In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see. I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this. I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January. It went away after 3 weeks and two days ago, started up again. She told me today, friends are starting to ask at school what is wrong with her eyes. We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends. She has ADHD and I'm also starting to see OCD tendencies in her. Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids. But it's so challenging. I worry about their future and their happiness. You are not alone in this!

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!

Hi, I started a gluten free diet for my 7 year old daughter on July 11th to see if any changes in her tics. I know it's only been 2.5 weeks and there unfortunately were 3 times within this timeframe that she did eat gluten as I wasn't around to stop it (camp, neighbours house etc). I haven't seen any noticeable difference in her tics. I paid extra close attention on the 3 occasions when she did eat gluten to see if there was an increase in tics within that 24-48 hour period and there wasn't. How long did it take for those of you who tried GF to see any differences? I want to try to do dairy next, but this will be extremely hard for her. We're going on vacation in another 1.5 weeks and I suspect it will be hard to keep up with the GF diet at that time. I'm trying to balance her happiness vs tics, the tics don't bother her (mainly facial grimace, throat clearing and a sniff) and she's been a champ with the GF experiment, but not sure how much of champ she'll be on vacation about it! Would love to know your experiences on GF, if it worked, if it didn't, how long to see any noticeable changes. Thanks!

How are you doing @Deanit? Any allergy results for your daughter yet? I can relate with the googling. From time to time when I’m really struggling, I have had to promise myself to not google anything on it. I’m on vacation now for the next 2.5 weeks and I’m stressed out about that as I find the weekends I’m at my worse as I don’t have work to occupy me. I spoke to my mom about it the other day and she said something that has really stuck with me - all the things I’m worrying about haven’t even happened and may never happen, just focus on the now. I keep thinking about that everyday. While I think my daughters tics are quite noticeable, it’s also because I’m constantly looking to see what she’s doing. My older daughter who is 11 has never once said anything about my younger daughters tics, so I keep in mind that maybe other kids won’t notice or say anything to her. I hope you are able to distract your mind and enjoy your upcoming vacation!

@merti would love to hear an update on how your daughter is doing. I’m going through this now with my 7 year old daughter.

Hi, I've been experiencing this for the last year. Last June, my then 6 year old daughter (now 7, will be 8 in August) started sniffing constantly. We did the usual allergy testing and ENT visits and nothing was identified as causing it. The sniffing lasted from June - October. Then seemed to stop but since December, she's had a number of different tics - vocal - sniffing, throat clearing, a hmmm sound. Motor - nose scrunching, eye blinking, lip pouting, scratching, knocking her knees together. I would say the real noticeable tic is nose scrunching and it is happening a lot right now (like 6 times every minute, all day long). We saw a pediatrician in February, who wasn't overly concerned about it. She was looking for other co-morbid conditions, and thinks ADD is a possibility. We've been monitoring her for that, but seems to be functioning fine. We go back in August for another visit. The types of tics come and go, but some sort of tic is always present. For a few weeks it's blinking, then for a few weeks it's nose scrunching. However, as of now she knocks her knees together, nose scrunching, scratching and sniffing. I'm giving her magnesium and a B complex vitamin but don't think it's really doing anything. I 100% expect for her to be diagnosed with Tourette's at our appointment in August as it will be 1 year by then. I'm so sad and not dealing well with it at all. My husband, who is as cool as cucumber about everything, it doesn't seem to phase him. He keeps telling me that there are so many other worse illness to get, this is nothing. While I agree, it really doesn't help me cope with it any better. I worry about her future and the bullying that could come in school. I truly hope it gets better as she gets older, lots of the studies say it will, but I'm so concerned that she will be in the minority where it doesn't. While I don't think I really helped address your concerns about what to do, I just wanted you to know you're not alone. I find reading people's stories helps give me some comfort.