Tics - what next?

[SAHRum]

I posted this in children's health but got no replies so hoping someone here might be able to help?

my daughter (Y1) has had a number of motor and now verbal tics over the past 18 months or so, we have always ignored these (having read up on the subject) and just let her get on with it. They come and go in severity and are quite noticeable at the moment. Previously this hasn't been an issue at school because quite frankly none of the other kids have noticed as they were all too busy doing funny kid stuff themselves but now they are becoming less egocentric they have started to pick up on it and dd's teacher asked how we would like to "handle" it. Talked it over with dd and she has agreed that it is ok for her teacher to explain that dd can't help it and it's just one of the things she does. I asked dd if she would like to go and see a man/lady about these things she does to see if they could give her any tips to help her make these less noticeable - she said yes which means going to the GP and getting a referral BUT do I go down this road? I don't want her to have drugs but perhaps some CBT might help? On the other hand I don't want her to think that there is "something wrong with her that needs fixing" BUT she has obviously noticed that it's something the other kids don't do and that they are now picking up on it and therefore making her more aware of it.

Any experiences welcome

oh and she tics everyday, pretty much all the time, each tic lasts about 3 weeks and then it changes slightly and it's usually one tic at a time.

Haha I was the kid who chewed on my sleeves 😳😳 there’s always something huh? Thanks-you’re right and it’s been really helpful to read about others in same situation dealing with it a bit more gracefully than I’ve been....

Well if your daughter is healthy, happy and loved, then your smashing parenthood however your dealing with it. We all just blag it, we all deal with things differently, but just try not to fret over it. There will be plenty of other parents worried and stressing over these things. Some will choose to voice it, some will keep it hidden, but we are definitely not alone. Just enjoy her for all her strangeness and I’m sure in a few years we will be more stressed dealing with parenting teenage girl issues and wishing we only had the little tics to worry about! 😆

I agree with all of that in theory, but I honestly get a sinking sensation when I pick her up from school and she's running around the playground grunting away, comes home and grunts away in front of the tv. Do you guys bring it up to people/have people noticed? At this very moment it's honestly so loud that I don't think it could go unnoticed. I dread playdates because of it, then ask myself why it matters so much, but then keep right on dreading playdates, conversations at the school gate, all of it. Even tough I'm sure everyone at the gate is, was, or will at one point deal with something tough. Any advice for whether to give people a heads up or just go in like it aint no thing....?

Giro98, can you recommend a good road to go down for blood tests, who to go to?

Hiya,

Please don’t be too hard on yourself. Your concerns and worries around school and play dates sound an awful lot like I was feeling. You go round in circles thinking about how the tics don’t seem to bother your child so shouldn’t bother you, wanting to educate people on embracing everyone’s differences etc to then wishing the tics would just do one and disappear!
At the moment, fingers crossed, we’re still having a really good run of hardly any tics at all so I am becoming more and more convinced that this is the right path for our daughter to be on.
So, I initially got in touch with a qualified nutritionist to help guide me through any changes we made to our daughters diet. She has given me some great advice and she recommended ‘Regenerus labs’ as the company to go to for the food intolerance test as they do a further process to the sample (that other companies don’t) called an ‘inflammatory cascade’ that helps prevent the potential for false positives.
I won’t lie, it wasn’t cheap but we now know our daughter is definitely sensitive to both gluten and egg. We’ve eliminated them from her diet and also started giving her some supplements (a good probiotic, vitamin D drops and fish oil) and right now, I’d say her tics have reduced by about 95%. This time last year she was doing a small ‘hum’ noise every 10 seconds or so and was also flicking her eyes to the left.
Again, this may not work for everyone, but if you do a little digging on the internet around this topic you should find quite a lot of other people who have had similar experiences to mine. Xx

*I'm talking grunting 4 times a minute.

We’ve had the grunting tic too and not that long ago, a teeth grinding one. I honestly do know how hard they are to ignore. I’m very ashamed to say but on more than one occasion I found reasons to stay in a different room to her rather than hear or see her ticcing as there were times when it all got a bit too much. For the most part I have been able to ignore them to a point but sometimes I couldn’t help putting my hand on her leg or arm and asking her if she was ok just to try to snap her out of the tic (I soon realised it didn’t do much though😕)

I should have said in my last post, if you were wanting to look at her diet, you could always try eliminating a few of the more common culprits (gluten, dairy and sugar) from her diet and see if there are any improvements before you spend any money on a test. We removed the gluten and the sugar first and when we saw it was working then we went ahead with the test (the fact that she out of the blue would start ticcing again despite all I was doing made me wonder if there was something else in her diet that didn’t agree with her).
I should point out, she wasn’t having bouts of a bad belly or any symptom that I saw as a classic sign of intolerance. Just the tics. She’s also had spells of anxiety/separation anxiety and there’s a chance it’s all connected but for the main part I’ve been concentrating on the diet/ tic connection. Xx

Thanks so much! My child is so picky (and lives on gluten) that it would be hard to make changes but obviously we would just do it. Does your daughter have a different lunch at school, etc, or do you just do as much as you can at home? So happy for you this has been the right path. Did people ever ask about her tics?

Leaving the room would be great. I’ve shouted stop it! Whatever you need to do, stop it

Yep- it’s fair to say it takes time for everyone to get used to going down the gluten free route.Our evening meals aren’t too hard as I find I can make most teas gf (shepherds pie, sausage and mash, spaghetti bolognaise etc) but her lunches at school are still tricky. The main issue being the gf bread as it’s a)expensive and b) it’s just not as nice as normal bread. The nutritionist advised doing a bento box which I’ve found to be the best solution so I try to include a little bit of every food group in there.
In terms how willing my daughter was to change her diet, she had a tic that really started to cause her pain (she would jerk back her neck quite quickly) so she was willing to give it a go to avoid the same thing happening. She still struggles with it from time to time though as she sometimes just wants to eat what everyone else is eating.
Whilst out and about some people have noticed her ticcing but, in general ,they didn’t notice it half as much as I did so that was fairly positive and helped keep it a little more in perspective. The first teacher to mention it was her year 2 teacher. I had hoped the tics were coming out more at home of an evening when she was tired after school but one day the teacher pulled me to one side to ask about it and so for the remainder of that year she would keep a record for me in a little book and would hand it to me at the end of the day so I knew how she had been (both tic wise and also to monitor her anxiety).
As the tics have waxed and waned over the last 4 years and changed between being motor and vocal, some friends have noticed more than others (to the point I think some thought I was imagining it!) but I’ve always been fairly open about it and found the more people I casually told, the less stressed I was about it. Her school friends have generally just accepted it. Once or twice she’s been asked why she was doing whatever tic she was doing as the time but we just taught her to hold her head up high and tell them ‘it’s just something I do and I can’t help it’ and that seems to be enough of an explanation for them!

www.ncbi.nlm.nih.gov/pmc/articles/PMC5986453/

This is one of the articles that popped up whilst I was researching tics/Tourette’s that made me look further into her diet. X

Thanks so much for taking the time to respond. Honestly so much was on my worry list re: kids, but this was something that just wasn't. Even though I had an eye blinking tic myself, it was just something that came completely out of left field. I feel like when I try to talk to anyone about it I'm either over or under-reacting in their opinion. :/

Giro, we just contacted Regenerus--do you mind telling me which was the package you bought? Also has anyone here had any experience with medications at all?
Thanks again :)

We went for the FIT test 132 (it was £311). We took some time prepping our daughter as you do need to do skin prick to draw the blood 😕 but it once it was done she was fine.
You may be able to find cheaper intolerance tests out there but since this was the one our nutritionist had confidence in we went with these.

Thank you !

Aw, you’re welcome. Best of luck.
On the one hand, I don’t wish food intolerances on your daughter(!), but on the other I hope this opens up some potential treatment options. Xx

Me too :/ did you guys (or anyone else posting) ever get a diagnosis?

Please tell me how you guys keep from losing your minds. I had never thought of myself as so impatient or intolerant but I'm having real trouble not yelling STOP IT when my house sounds like a barnyard in the morning, every morning (the grunting!)...and night. I hate that the idea that its something to be embarrassed about is coming not from school or strangers but from the person who is most supposed to accept her. I think bottom line is it makes me sad to be around her, and that comes out in anger. Anyone identify/can advice? Best my partner can do is say "just don't" and, while he's right, it seems I can't just not. No matter how much I tell myself there are worse things or that she is healthy. In the moment I can't keep myself from yelling STOP IT.

I don’t have any magic advise on that, accept I have felt the same and I have told my daughter to stop it several times. But my daughters changes all the time. I can cope with the physical ones a lot easier than the verbal ones. But I just try and think as much as I want to demand her to stop doing it, she wants me to stop correcting something she can’t help. So it seems unfair me expecting her to take control over it, when I myself am not controlling myself snapping at her to stop. So when I think about it that way, it helps me bite my lip and not say anything.
And all the advise I’ve read online says not to bring attention to it as this often makes it worse and I feel this is true . When we are relaxed and calm, it’s a lot better than when she feels anxious, so I know me snapping will only make her feel worse and probably do it more!.
But just like our children are their own characters you and I are too, so I feel I can control it 99% of the time, so just try working on Methods that work for you.... counting to 10, leave the room, put your headphones on, turn the tv up etc. Anything really that helps. You want her to control it so your task is the same, you need to work on controlling how you act to it. Not easy!!!! But don’t beat yourself up about it either. Children without tics can test our tolerance levels and we all lose it sometimes, so this is just another thing to test us. I feel my daughter is getting better, or atleast, the grunting and rapid eye blinking have gone for now, so it’s easier to ignore the arm jerks etc. When reading books together it can annoy me a bit, but I sometimes just say “comfort shuffle” and move myself with her. We just make light of it as it helps me anyway.
Best of luck. X

Thanks for getting back to me, I was feeling quite alone and it's proven a hard one to talk about in real life. Ha you're right, I'm not being the best model of self control ;) Ya, the physical ones don't bug me--I can even find it sort of endearing, but the vocal ones scare me, which leads to anger. x

Sorry to jump on the thread but I also worry about my daughter age 12. She has physical tics and I used magnesium and it really helped but now the tics are back and nothing seems to help. She has started high school and I am worried she will get bullied because of it and I also worry it will turn into tourette's and will start swearing. She is such a lovely kind girl and it's so hard seeing her doing these tics. It's mainly eye roll and neck thrust. She also sucks in her stomach.

I hope this finds everyone doing ok; it's certainly been a strange few months. I was wondering how lockdown/going back to school has affected tics for your kids? Have teachers/kids mentioned anything? My 6 year old has started year 1 and I'm not sure if I should mention to the teacher or not...

Can I also ask if anyone's had the neck jerking tic...like a chicken type head movement? We are still dealing with all this :(