Tics - what next?

(49 Posts)
SAHRum Mon 13-May-13 14:50:24

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.

OP’s posts: |
PJM18 Tue 14-May-13 00:02:54

Hi. I have the same issues with my 6 yr old son. How old is your daughter? My son has motor and vocal tics (throat clearing) and like your daughter he has them most of the time and they change. He often has more than one at a time. I have tried asking him if his habits annoy him but he says no and doesn't really want to talk about it. I don't think other kids have said anything yet but this does worry me. I find it all very upsetting for him and get quite anxious at times when it's bad. I have never gone to the GP about them as like you would not want medication. Some kind of talking therapy may help your daughter cope with this but it's very difficult to know what to do for the best. I have often wondered about hypnotherapy but that's more for trying to control the tics. I'm really hoping he grows out of them but no sign of that yet. Let me know how you get on.

SAHRum Tue 14-May-13 10:01:32

hey there PJM18 my daughter is 6 in a couple of weeks. It's such a worry isn't it?

I emailed someone at Tourette's action and asked for advice, they said that many people feel as we do about seeking medical help but that to get these things logged in an official capacity can be useful particularly when it comes to issues at school. Medication is a very last resort and usually only used when the tics are very very bad and very very disruptive, causing a lot of emotional distress and "normal" life being impossible so that is a big relief. Although dd's tics are more noticeable they are a long way off from that level. I made an appointment at the GP, 2 weeks away (oh the joys of living in London) but this is good as it gives me more time to think about it. I'm still undecided but dd has said she would like tips to help her so I am thinking that maybe she has the maturity to understand that this is not a "problem". Lots of children do grow out of them and tics don't mean it's Tourettes but if these tics are hanging around for a while then maybe coping mechanisms are better than just leaving it? I'm going to see how things go in the summer holidays (unlikely that I will actually get a referral appointment until then anyhow) as I think her tics are worse when she is at school. When did your sons start? My dd had a blinking tic for a few months when she was about 3 which we didnt' realise was a tic and thought it was to do with eyesight, by the time we got an NHS appointment to have her eyes tested it had disappeared. I didn't notice anything until she started reception but again I didn't realise they were tics - she would scratch each new page when we were starting to read school books at home, she then went through a phase of sucking her bottom lip which - I am ashamed to say - I viewed as similar to thumb sucking so kept telling her to stop. After this, it was a low hum and it suddenly clicked that there was something going on. It did improve over the last summer holiday but was back when she started Y1 (she was very anxious about this, she doesn't like change or the anticipation of it , once it's done she's fine ... or maybe she isn't!!!), we started giving her magnesium supplement and she practically stopped her tics (lots of motor ones at the time) over night just the odd one now and again but after about a month they started up again as vocal. We stopped the magnesium for a week on holiday at Easter and by the time we got home she was tic-ing in her sleep sad (clear evidence that they really can't help it) so we started her back on the magnesium and she now only tics in the day. Her teacher has started mentioning moving up into Y2 over the last few weeks and her tics have got worse so maybe she is more anxious then she is letting on. Poor thing.

On top of all this she has a nut allergy which we found out about a few months before she started school and I'm wondering if the constant daily worry of this has contributed.

Sorry about the essay!!! blush

OP’s posts: |
MadeOfStarDust Tue 14-May-13 10:10:49

Interesting that there is an allergy as well..... our daughter now 12 has always had a tic (blinking and extending neck with vacant/ditzy behaviour) - she gets it in her allergy season - Feb to June (birch/tree pollen) and Sept/Oct (spores from mould).

Ceterizine based anti histamines help A LOT - it may be a placebo effect - we tell her her tic gets better when she is on the tablet, or it may be stress of allergy on her system being alleviated that does stop it, but it is definitely allergy related with her......

SAHRum Tue 14-May-13 10:26:31

ahh interesting, my daughter's tics seem to get worse when she has had anti histamine (although better on ceterizine than piriton) - she is also allergic to tree pollen and horses. When she was very little (3yr) anti histamine given for hay fever sent her up the walls - unlike most kids who go docile she would become slightly agressive and very manic in her behaviour, she seems to be ok on that front now but her tics do get worse. I guess everyone's physiology is different and I think some tics are "just" environment related. I think maybe my daughter's are more neurological?

How did/do other kids treat your daughter when she's tic-ing?

OP’s posts: |
MadeOfStarDust Tue 14-May-13 10:44:44

She has never mentioned a problem at school - other than one teacher asking her to pay attention (during the "vacant" phase) - and we have always treated it as just a part of her - not an important part - just something that happens... like someone who taps a pen, sucks their hair or kicks the table....

I hope all goes well with your little girl ....

PJM18 Tue 14-May-13 23:51:03

Hi Sahrum. My son's started when he was about 2 with eye blinking then a period of rubbing his face a lot. He had spells without any until the last year or two and now there always seems something, often more than one at a time. He's had sniffing, throat clearing, hmm sounds, putting his ear to his shoulder and shrugging his shoulder, touching his shins, sucking lip and so on! I was very aware that the initial eye blinking was a tic as my older son, now 13 had them as we'll but not so bad. I find it very difficult to cope with and hard not to say don't do that although I know not to. What magnesium do you use? I have floridax liquid one but not sure if it helps. I have now decided not to worry whether it's tics or Tourette's as it scares me a bit but I try to think of it as one long spectrum going from very mild to severe and it doesn't really matter what it's called. I don't think I want him labelled with a condition so have decided not to go to doctor unless it was very very bad. I do understand you wanting to give your dd strategies to cope and it will probably depend what services are like in your area for children. As my son doesn't seem too upset by them at the moment I'm going to try to increase his confidence as much as possible and he's started going to football etc. I sometimes think it's me who needs therapy not him!
I'm not sure how to get private messages but send me one if you want to swap information once thread ended. It's good to hear what someone else finds useful etc. Interesting re nut allergy as my older son was diagnosed with peanut allergy last year. My 6 yr old hasn't shown any probs but sometimes wonder as we avoid peanuts anyway.

SAHRum Thu 16-May-13 11:09:01

exactly the same here PJM18 eyeblinking when she was 2 for a little while then nothing (that I noticed) until she was 4 and a bit when she started school. She is an only and as I don't have family close by and have been SAHM she and I had been stuck like glue pretty much all of the time. She coped well with starting but by christmas she had begun to tic (little things that I didn't realised were tics) and this was the time when she realised school was "forever" and she also started talking about moving up into Y1 - I think some of the kids with brothers and sisters had been talking about it and she doesn't like change, is the same with dancing and swimming classes, doesn't want to move up but is fine when she's there. How is your son with things like this?

Yes, floradix liquid - doesn't stop the tics but I really saw an improvement when we started it and as I said before going without it for a week resulted in her tic-ing in her sleep which has stopped now she's back on the magnesium. Out of interest is your son dry at night? dd is not but was dry in the day at 2.5 shock

I understand what you are saying about the labelling, I totally get where you are coming from. Having an older son who has been through it and come out the other side must be reassuring for you and I totally know what you mean about therapy for yourself wink.

I think allergies can make tics worse mores the pity.

I will PM and let you know how I get on at the dr's etc - it would be good to have someone to share with who is going through the same thing thanks

OP’s posts: |
PJM18 Fri 17-May-13 00:14:43

Hi. My son is not too bad with change but I have noticed that sometimes when the tics have been quite bad that he seems a bit more emotional than usual although he is quite a sensitive little boy anyway. He is dry at night but over the past year or so has had some occasional problems with soiling. Been to GP about this recently and he has been given movicol incase it's due to constipation overflow.
I have a diary which I write in when I remember to try to keep a track of what tics were happening and how bad on a scale of one to ten to see if I can notice any patterns or triggers. I think what has helped doing this is that there have been some times when I have given the tics a 7 or 8 but a few days later have been a one or two. This reminds me that however bad it seems one day, it might not be so bad the next.
I just wish I didn't get so anxious about it as I'm aware a that some days when I pick him up from school I'm worrying about what he'll be doing and when a new tic appears I feel really stressed. I just don't want this to take away from my relationship with him as he is a lovely, funny boy and I think the tics sometimes stop me from enjoying him as much as I should. I know that sounds terrible and really shallow when there are children with much much bigger problems. I think it's the uncertainty of what's going to happen next, especially for someone like me (control freak!)
On a positive my son is doing really well at school and him and a little girl get harder maths work which he seems quite pleased about. I was worried that it might affect his concentration and have been close to talking to his teacher about it but keep putting it off.
Let me know how things go.

huntclaire1 Thu 22-Aug-13 23:34:02

My daughter is 7 and has tics from the age of 2 which have now lead to motor and vocal and slowly there getting worse our peadatrician has priscribed medication but to no affect. They get alot worse with tiredness or anxiety but we've just accepted there part of her but when children or sometimes adults stare at her it really breaks my heart I wish there was more I could do for her has anyone tried any natural therapies?? As I've stopped the meds and I really don't want to go back down that road any advice would be great :-) x

Rachhead Sat 12-Oct-19 17:36:52

Hi. I know this is a old feed, but was wondering if any of the above people can update on their children (& hopefully give me some hope!). I can relate to all of the above as currently going through it with my near 6 year old. As your children are now older, I was wondering if any of you get this notification , you could try and update me and tell me what worked for you all.
Many thanks. Xx

PJ67 Sun 13-Oct-19 01:20:28

Hi Rachead. My son is now 12 and his tics are so much better. I think they were at their worst when he was 5 or 6 and have gradually improved. He still has them occasionally but not so noticeable at all and I'm much less anxious about them.

PJ67 Sun 13-Oct-19 01:21:48

Just noticed I must have changed my user name at some point but I'm pjm18, one of the posters in the original thread!

Rachhead Sun 13-Oct-19 10:41:06

PJ67 - Thankyou so much for updating and I’m so glad to hear things have improved for your son. I just hope things go the same way for my daughter. At the moment it’s all very worrying & I can relate to all your old feelings about being anxious about the unknown and constantly worrying about what will happen next. I’m also keeping a diary of what she does. But Thankyou for your reply, I’m going to try and get into a positive mindset and try to assume things will improve for us too & enjoy her rather than keep studying her! :-). Thankyou and best wishes to you and your boys. X

tempnamechange98765 Sun 13-Oct-19 14:10:58

Just wondering how frequent do these "things" need to be to be classed as tics?

Rachhead Sun 13-Oct-19 19:17:01

I don’t know the answer, but in my daughters case, the ‘things’ happen every few minutes. Less if we’re busy doing something, but if I sit and watch her, I can see her react in one way or another every few mins. Some other people say they don’t notice her do anything until I point it out, but I think that’s just because kids are on the move so much and do silly things etc, that it gets hidden, but I can definitely see the repetitive movements she does. I’m guessing if it was something like once a day, it wouldn’t be considered a tic, but I don’t know what the exact definition is.

tempnamechange98765 Sun 13-Oct-19 20:19:12

That's helpful thank you.

1stIVFjourney2015 Tue 15-Oct-19 11:24:51

Hi, I don't have help or advise really - but I wanted to just say that I was one of those kids. First I got a stutter in about year 2, then I gained the eye blinking. I did hair pulling and eyelash pulling and then it was like a flick of the head or rolling my eyes.

It did seem to be brought on by stress or anxiety, and still is to this day. I only stutter of do ticks if I am nervous/ stressed or even sometimes when I am extremely happy.

Even though as kids they are only little, it may be worth investigating any anxieties or stress, and try to remove it. Or even try to just make them feel safer? - I know that's what triggered me, anyway. But then my dad was awful and a lot of it I think came from him!

Giro98 Sat 19-Oct-19 10:51:48

Hi Rachhead,

I’m in a similar position to you. My nearly 9year old daughter has ticced on and off since she was around 3 or 4 however we only really noticed it when she turned 5 and had a fairly pronounced body jerk that lasted around 6 weeks. Since then we’ve followed the standard advice of not bringing any attention to it and have tried to ignore it but just this summer it definitely started to get that little bit worse. This led me to an awful lot of internet research and I came across a growing connection on different forums that there may be a dietary/environmental factor to be considered (as discussed earlier on in this thread). My daughter does have a peanut and dust mite allergy so it made sense to me that her body is reacting to certain foods/toxins and that is playing a role in the tics. We’ve since removed gluten and refined sugars from her diet with really positive results. For three years her tics worsened whenever she sat in front of a screen but since changing her diet this is almost down to none. We still have a way to go and only time will tell if this is actually the best approach but in my mind, I’d much prefer to do this than have her go on medication.
Does your daughter have any allergies or intolerances you’re aware of?

Rachhead Sat 19-Oct-19 21:26:50

Hi Giro98. Not that I’m aware of!. We try to eat a fairly balanced diet and there has not been any reactions or behaviours that make me feel she’s reacting to anything (apart from the tics!), so I wouldn’t know where to start to try and find out if she is allergic to something??.
Refined sugars are not good to anyone so I would be happy to remove them, but I bet that’s no easy task, they seem to be in everything!. But I’m glad to hear it’s all working for your daughter, maybe I’ll try and make some adjustments and see what results we get .
I’ve read a lot about stress or anxiety causing flare ups, but again, I can’t think of anything that may be causing it. I had my second baby 12 months ago, so maybe that’s had a effect on her but overall she seems very happy and content. She’s always keen to go to school, she’s always happy at home, so I would love to think there is a reason making her have these tics so I could therefore work on solving it, but I don’t know what to try. I think that’s the worst part, feeling so helpless & not being able to help & dreading what may happen in the future. :-/ x

Giro98 Sat 19-Oct-19 23:48:19

I completely understand your feelings. I get a horrible sinking sensation every time I see her ticcing out the corner of my eye. It’s really heartbreaking to see her moving her eyes or her body in an ‘odd way’ and I’ll always scan the faces of whoever we’re with to see if anyone has noticed. Like you, I worry about her future and if she’s going to suddenly get worse or if she’ll simply outgrow them (which I’m told many people do).
With the allergies, I’d hate to send you down the wrong path as I do feel there may be quite a few reasons behind what causes certain people to tic and I’m still relatively knew to looking into it but I’d urge you to just do a little internet research on diet and environmental tic triggers and see if anything rings true for you and your little girl.
For my daughter I’m fairly certain she’s reacting to particular foods (we’ve actually just gone down the route of doing some blood tests to check for other intolerances)but in addition some of her more apparent tics have coincided with when she’s come into contact with chemicals e.g when she was 5 we had to treat her hair for head lice and that set off a big one, after she swam in a heavily chlorinated pool was another.
Again, this might not apply to your situation but there is plenty of evidence out there to suggest these things can have an impact so for me, it’s definitely worth looking into. It’s given me some peace of mind just knowing there may be a way of helping my daughter over and above waiting to see if she gets better as she gets older. Whichever way you decide to go just know that you’re not alone with having a child who tics. I’m new to mumsnet so I don’t know if you can private message but I’m here if you ever wanted to talk/vent! X

taykitty20 Sun 01-Dec-19 09:59:05

Any advice on how to ignore tics when they’re happening? I really struggle with it..thanks to those who updated-so nice to hear it can get better!

taykitty20 Sun 01-Dec-19 10:01:22

Are you guys talking about vocal tics too? Those are the ones I find really difficult and am really hoping they are outgrown. Pj67, my daughter is 5 and I was assuming it would only get worse, so it’s comforting that for you guys it improved after 6...

Rachhead Sun 01-Dec-19 22:13:37

Hi taykitty20. In my case, it’s both. Physical tics like the rapid eye blinking seems less at the moment, but the latest physical is a arm jerk (like she’s putting a coat sleeve on) & sometimes a vocal one like a throat clearing sound. Before, I’ve had vocal ones like a low humming sound which was hard not to shout “please stop it” too & different physical ones like a chin to chest movement, ear to shoulder etc.
In my case, it’s impossible to ignore it completely as I notice it all the time, but I’m realising the trick is to accept it. Worrying and being upset about it won’t stop it, it just makes you feel down.

I know everyone says don’t bring it up with them, but I have tried calmly asking in a sort of light hearted joking way... why do you do that?. I asked if it felt good and she said it did. I even once said, can you tell me that again without moving your arm? & sure enough, she did. But no sooner does she stop it, shes busy doing something else & does it again.
So although I can’t ignore it, I’m realising I also can’t stop it, so there’s no point in letting it get to me. The tics change, so like when a baby is hard, I just keep telling myself, it’s just a phase & we’ll get past it.
Maybe it’ll be for the rest of her life, maybe it won’t. The story above gives me hope, but I just have to accept her and try not to worry about what ‘could’ happen, just focus on what IS happening.

I also don’t call them tics when chatting to family etc, I call them “habits”. I don’t know why, but it feels easier to say that’s her latest habit.
Children will always cause you to worry, but when I see her doing it or hear the strange noises, I try to just think of poor parents that are hearing their children’s life support machine beep etc. Me listening to my healthy daughter ‘hmmm’ can then seem less of a bad thing?. It’s just part of her and I have to accept that.
Its not nice to hear and see, but just try to stay positive it will get better. Maybe it won’t, but just deal with each new thing as it happens as it may just be a phase?.
But I hope things improve for you! But I’m slowly accepting to relax more about it and it’s helping us all X

taykitty20 Mon 02-Dec-19 07:01:38

Thanks Rachhead--I know it's so important to keep it all in perspective, but it gets me so down and I'm sure changes the way I am with her and it's probably all a vicious cycle. I think it doesn't help that her behaviour sucks in general at the moment so it's sort of one more thing to be angry about. Are you guys going to see anyone about it or leave it be?

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