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Advice needed regarding Tics / Motor Tourettes

(15 Posts)
nickminiink Mon 25-Jul-11 13:41:44

Hi, hoping someone can offer some advice / experiences. We have just came back from our holidays a week in wet Wales, we went with my partners parents, brothers, nieces and nephews, there was 13 of us and we have done this for the last 3 years, so not a new experience for my SN 10 year old son who has SLD and poor working memory. Both my children get very excited about the holiday and spending time with family and their uncles border collier. Just before we left for our holiday, our local Paed had confirmed in her opinion my son is not autistic after yet more tests, she commented he is an exciteable boy, which she observed whilst taking part in sports etc. We are use to his exciteable behaviour, especially when he plays on his DS or when he is praised etc. However this holiday he seemed to have devloped other tics, which really upset me to the point I had to leave the room. They started approx 2 days into the holiday, excessive blinking, the one that upset me the most was continued face grimacing, where you could see his neck muscles tensing, he looked in pain, even though he wasn't. The other tics that we thought had gone away came back as well such as sucking his bottom lip and twisting his hair, which left self inflicted bald patches in the past. So within 1 week he had 4 tics all going on at once, my partners family had never seen any of these in the past and they were all shocked at what they were seeing but never made my son feel awkward, only for his 10 year cousin who thought it was funny. I am not sure if he has motor tourettes, could a change in diet, tiredness etc cause tics. I am struggling to why this had happened, my partners mother thought it could be his DS, but he's played the DS prior to this with no reaction like this. We have just won an appeal against the LEA for SA which took so much effort to get has left me exhausted and so stressed. I thought a week away I can relax for the first time in a year then all this happened and now I feel stressed and anxious again as I do not know what to do. I discuss it with my partner mother of our son, but thinks this whole fighting the LEA, School and professionals has left me paranoid and that I am looking for problems in my son. She takes the line time is a great healer and then we argue and fall out over it. Should i go to our GP about these TICS etc, not sure where to go from here, he's 10 the age where kids are cruel and his blinking hasn't stopped since we got back, the grimacing has a little but still clear to see, along with the lip sucking.
Sorry for the long post.

dolfrog Mon 25-Jul-11 14:33:38

you may find this research paper useful
The Behavioral Spectrum of Gilles de la Tourette Syndrome

moosemama Mon 25-Jul-11 14:46:12

My ds1 is 9 and has AS. He has several tics that come out particularly when he's tired, stressed or unsettled (eg out of his normal home enviroment, such as on holiday). He does the blinking, grimacing and hair twisting (although not to the point of causing bald patches) and also has a couple of vocal tics (throat clearing and a little sort of hum).

We were told they are very common in children with ASD and in most cases its not indicative of tourettes. I think for tourettes the tics need to have been concurrent and persisted for a lengthy period of time.

My initial reaction to ds's tics was similar to yours. I was so upset to see him blinking (exaggerated blinking, like screwing his eyes up) and grimacing and was convinced he was developing tourettes. He on the other hand was completely unaware he was doing it and when things settled down (he was going through a tough time at school) they slowly faded out and then stopped, although it wasn't immediate - it took a while.

coff33pot Mon 25-Jul-11 15:32:13

My DS is being assessed for AS and he has had numerous little tics over the last couple years. From raising and loweing his eyebrows, throat clearing, eye rolling and growling randomly for no reason. They all faded for a while but have come back and have stayed for the last few weeks so much so his eyes now roll up into his head and he has an intermittent scream, high pitched and short. I went running to him the first time because I thought he hurt himself but no it turned out it was a tic.

When I asked why he moved his eyes that way he says he cant see if he doesnt do it and his eyeballs itch. Was told that tourettes is also on the spectrum but they think it is part of his AS.

I talked to my GP who advised taking him for an eye test first (there are other tics but she chose to ignore that fact confused Then come back and see the GP again. Commented that he maybe doing it just because he doesnt want to do something. Obviously I am now looking for a more experienced GP! because the tics are a regular occurance wether he is thinking, tired, playing, stressed or talking.

dolfrog Mon 25-Jul-11 18:22:46

This looks like are area of issues which is still not really understood and or defined.
The hair related issues would appear to be Pediatric trichotillomania which is appears to be part of the obsessive compulsive behavior/disorder spectrum of issues which can also relate to Tourettes syndrome all very complicated, and still on the cutting edge of research.

nickminiink Tue 26-Jul-11 13:17:52

Thank you for your comments, I try not to say anything to my son regarding the TICS as this points out he is doing something when he says he doesn;t know he is doing it, then he starts to supress them until he has to let it all out and they seem worse. Still not sure what to do I guess I will have to ignore them and hope in time they fade away, this has happened in the past especially the blinking but its come back with a vengance.
coff33pot thanks for your comments have you spoken to another GP, do you think I should take my son to see a GP, can they help.
Moosemama, how long did it take for your ds1 tics to fade away, and have they come back or is there any specific thing that triggers them still.

My son struggles with school and he gets stressed, so now I am worried now he has numerous tics they may never go away, not sure what to do.

Thanks Dolfrog, yes very complicated, just as you think you are getting somewhere another problem appears.

Thanks again

Lambskin Tue 26-Jul-11 14:55:22

My ds1 is nearly 18 now, NT and has had tics, both motor and for a while vocal. I took him to the GP when he was about 10 although he'd had it since he was 7. His tics were primarily blinking, clicking his fingers, and facial grimacing, all of which are going to get you noticed at school, and he did get bullied because of it.

He was referred to CAMHS but they said that it wasn't Tourette's and he had Behavioural Therapy for a few months but thought it was a waste of time so stopped.

He still has tics and says they exhaust him. He's not an anxious person and is actually pretty relaxed so I don't know why he does it.

I feel like he was let down by the NHS and has had to cope with this alone. Maybe I should have made him keep going to the therapy sessions but I had ds2 in the middle of all this.

Rambling a bit now, sorry! I think going to the GP's a good idea, they may suggest some good techniques and exercises that'll help (if he's not a stubborn sod like my ds1!)

moosemama Tue 26-Jul-11 17:20:00

Nickmini, its difficult to say exactly, he was at his worst at the end of last Summer through to Autumn, when he was terrified of going back to school after the holidays. He started seeing an EP in October and the tics got worse for a while then started to slowly improve. I can't remember exactly when they disappeared, but I do know that they'd gone by his assessment mid January this year.

They have been back, but only briefly (the odd week here and there) and separately. We usually find out afterwards that he was particularly exhausted or there was some stress going on at school (usually bullying). Its not always possible to get to the root of it at the time, but it tends to be both exhaustion and stress at the same time and they can appear when he's coming down with something as well.

I have a feeling they will reappear at the end of August as he starts stressing about going back to school again.

Triggles Tue 26-Jul-11 18:29:44

DS2 has a number of tics, but the most noticeable is his eye - it's a direct indicator to us that he is stressing and getting ready to fall apart. The more it appears, the worse he is. It did take us awhile to put it together, you'd think we'd have caught on sooner, but we were so worried about other behavioural things, that it got by us for awhile.

nightcat Tue 26-Jul-11 20:28:43

<hijack>
Can anyone help me to see the link to a cause/effect on tics that might have some element of practical application?

My ds has mild tics on and off, mainly one-sided blinking, some scratching and throat clearing. He recently had to have general anaesthetic for a minor surgey and after that for a few days his tics had disappeared.
Unfortunately the effect has now worn off. I would really like to know if anyone observed similar and if it is to do with neurotransmitters, what is it exactly that made the tics go away - and if there is any practical avenue to explore on this?

dolfrog Wed 27-Jul-11 01:02:05

nightcat

This research paper may help,
Treatment strategies for tics in Tourette syndrome

Toffeefudgecake Wed 27-Jul-11 02:04:51

Nick - sorry to hear about your son. My own son has also suffered from a lot of tics and has now been diagnosed with Tourettes with OCD. Tourettes Action state that: 'for TS to be diagnosed, multiple motor tics and at least one vocal tic must be present over a period of at least twelve months, without a break of more than three months.' You can't be diagnosed without a vocal tic (it doesn't sound as if your son has one).

Also, I think (though I can't be sure) that Tourettes would have shown itself earlier than age 10. My son had his first tic aged three. He went on to have various motor and vocal tics over the years. I'm afraid the GP simply referred us to CAMHS, who were very little help. Recently, we asked for a referral to a psychiatrist and this time we received a diagnosis. I wish we'd seen a psychiatrist years ago. Could you ask to be referred to a psychiatrist yourselves?

nightcat Wed 27-Jul-11 09:23:25

dolfrog, interesting paper, thank you

coff33pot Wed 27-Jul-11 12:32:42

I had a good read myself too dolfrog. Very interesting smile but also concerning when you read all the side effects of the meds too shock

I think I would really have to way up the odds on meds/side effects and as to how the tics affect my sons life and if severe or not to need them confused

nickminiink Wed 27-Jul-11 13:13:48

Thank you so much for replying to my post, obviously I am not alone, I think with the stress of the last 12 months of fighting for SA, this latest problem has hit me the hardest guess I am just exhausted and over stressed. To see your child struggling and not being able to help is so frustrating, I feel useless to him, ok enough self pity, thanks again.

Toffeefudgecake - No he doesn't have a vocal TIC just 4 motor tics, which have all come togther over the last week whilst on holiday, the face grimacing has subsided alittle still there but not all the time. It's strange the blinking and grimacing came on after we had been swimming whilst on holiday, does anyone know if chlorine is linked to TICS, just clutching at straws. Thanks for the psychiatrist advice, poor lad is having so many tests lately.

Triggles - I know what you mean I have been so wrapped up with the SA/appeal thing, I guess I have over looked other problems and now for the first time I can relax alittle bang I have noticed them.

Lambskin - My son was 8 when the blinking TIC was present, he was called names because of it, of course I took the fight on to the point I got the bullies via the school to write an apology letter. The blinking eventually faded away until 2 years later, I am worried about secondary school and bullying which stresses me out more, but I know I will always fight for him regardless of the situation, i don't back down easily. Got a GP appointment Friday so hoping for some advice, my son can be subborn now so not sure in a few years what he will be like. Thanks for your comments.

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