Tourettes Action
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Son started tics - help

2 months ago my son started a head jerk tic out of the blue. The gp assuared me it’s a habit that would go . However my son has done this head jerk every single day non stop for nearly 2 months with no rest. He has also started a shoulder shrug and a few days ago complained that he’s starting the feel the same thing with his toes where they curl up. He sometimes also makes different noises with this mouth but these vary and not that loud .

He has also become more emotional cries every day and gets very angry and refuses school , this is all new to me and I’m so emotionally drained

I’ve asked him if it hurts and he says no most times but at times he will say yes and I will give pain relief. He still does his sports as he’s very active but other kids are starting to notice which is I can tell destresses him . We try not to mention his tics unless he does

My question is will the herd jerk go away or stay forever as I can’t imagine The damage in the long run. I have also noticed that it increases when he is anxious, I wonder if I was to concentrate on helping him with anxiety if that will change things. I don’t want him to suffer for the rest of his life . We are waiting for a nuero referral

I feel sad, angry , alone

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Hi my son is twenty five now and has Tourette’s with associated OCD/ADDand Dyslexia . A real mixed bag !!

Just wanted to reassure you there is always hope 🙂

He was diognosrd 7 but started head , shoulder and eye tics at age 6 !!

It was a very distressing time and we felt we had lost our child and been given another ! We went through a sort of bearevrment !! But once we got the diognosis and saw a specialist nerologist we knew more of what we amd he was dealing with . I can’t say it hasn’t been tough while he was growing up ! It was the most challenging experience we have ever encountered !! But I am a much stronger person as is my son 🙂

School years were the worst as you have to fight for every bit of educational support you can get for him . But don’t give up ! Also definitely take him to a Tourettes specialist . No one else understands !!

On a positive note my son is the most caring , kind, resilient person and Iceouldnt want him any other way Tics n all ❤️ He says that the tics are part of him and who he is . He’s also working now I. Full time employment which has been a struggle god him , but I am so proud 🙂😍

I hope you find the right suppor you need for your son . Look up the Tourettes UK website . You will find lots of information there and names if specialist consultants . You are not alone join a support group near you . Xxx

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Thank you, this just made me cry as you described exactly how I feel. It’s like I’ve lost my boy but deep down it’s still him and I love him so much. Today it’s mothers day and the first thing he did was give me a gift he got me some nice chocolates. He loves me so much and I know he needs me more than ever.

I’m glad that your son is working full time that gives me so much hope. You seem like such a great mum to your son and I’m sure that’s why he’s been doing great. Bless you . I do dread school and what’s to come but one thing for sure I will be there for him that’s not going to change.

Did they get better or worse as he was growing up ? How are they now compared to when younger and did he ever take medication. I will look up specialists near me thank you. ❤️

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The tics won't go, but they will change. They often fade off at the end of adolescence, or just blend in. It can be very distressing, painful and embarrassing.

I wrote this when my son was 9 in frustration at the false picture Facebook was giving my friends and family (we present a highly curated version of life, don't we?): amanwy.blogspot.co.uk/2014/...

Since then things have become worse, and last year was hell-ish. But with help from Action for Children (it's a shame this only gets offered to you when you are in crisis) we are managing a lot better.

It is a grieving process. The hard lesson for me to learn that strong boundaries are more important than ever.

Good luck. You will get through it. Just remember your lovely little boy is still in there

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Hi Katuru thank you for sharing your post. As you have probably researched, for a diagnosis of Tourette Syndrome, a person needs to present with both motor and vocal tics for at least 12 months. It is great that you are waiting to see a Neurologist as they will be able to advise you on what might be causing the symptoms. There are different tic disorders and other conditions which share symptoms with Tourettes, which is why its so important to receive specialist advice. Although all neurologists are able to diagnose TS, they won't all have experience within this field so its worth knowing that Tourettes Action has a list of consultants who specialise in diagnosing and treating TS. You can access this by contacting the helpdesk: 0300 777 8427 or help@tourettes-action.org.uk

They also have a list of therapists who provide behavioural therapy to help manage the tics. It's well worth spending some time on the Tourettes Action website as it has lots of information, including school resources. Anxiety commonly causes tics to get worse so you may find that helping reduce your son's anxiety may help the tics. However, tics also have a life of their own without any obvious trigger.

The nature of tics is that they come and go and although some people find that some tics tend to 'stick', more often then not they're interchangeable. It sounds like you are doing everything you can in terms of reassuring him and researching around his symptoms. Do please contact the Tourettes Action helpdesk if you would like to speak to one of the team.

Best wishes

Helen

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I would just say that I have a 7 year old boy who started a head jerking tic out of the blue at age 5 and a half. It was violent head jerking and it was beyond distressing to watch. There was no chance that people wouldn’t notice - you could see it from the other side of the playground. That tic did fade after 3-4 months or so, and others have come and gone in the two years since. Nothing as violent or as noticeable as the head tic that he started with, in fact only I notice most of them. At the time when it first started happening I was in despair and cried myself to sleep for night and on end. Just wanted to give you some hope that it won’t always be as it is now, and try not to assume it will get worse and imagine the worst. Tics are common and now I know what I am looking for, I see them all over the place - including in my husband (who I married and had no idea that some of his facial expressions were tics!) lots of love to you x

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I’m glad that your son isn’t doing well and also thanks for the words of encouragement it’s nice to hear some positives. . I have to stay positive and hope things get better. He’s showing up for life just fine and I’m glad besides the mood swings etc .

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My initial tic began with my nose, and then moved into a neck jerk which was my first most obvious tic. It frightened me so much because I just had 2 do it. It made my parents so very uncomfortable, which made me sad and more anxious. I felt responsible for their discomfort, but there was nothing I could do at the time. In the long run--anxiety became the norm for me and I just had to figure it out day by day. My initial tics have long been gone, and thankfully replaced by other less obtrusive tics (although my teen years are another story). Keep it together and he will teach you. tictalk.

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