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Lilypad

Tourettes syndrome

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Hi I was wondering if anyone knows anything about getting a diagnosis for Tourettes syndrome... My son is 8, still waiting for a diagnosis for ASD and has been having tics for about 18 months. They started as blinking, throat clearing and sniffing but they seem to be getting worse and he seems to change them every few months. At the moment he is making a 'clicking' noise with his tongue, humming or grunting and has recently started to make a movement with his upper body as if he's twisting and shrugging his shoulders at the same time. They seem to be worse at hometimes after school.

We have an appointment with CAMHS next week and I was wondering if they would be able to diagnose him or would I have to take him to the doctor? His next appointment with the paediatrician is not until May and I feel I can't wait that long to ask him because it's starting to make me anxious wondering what it is and scanning the internet for advice. Everything I look at points to Tourettes Syndrome and I was thinking this may explain his ASD type behaviour (sensory problems, literal thinking, tantrums etc)

Any advice would be appreciated.

Thanks.

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Can't really help over the dx question, but wanted to offer some reassurance.

 

My DS was diagnosed with borderline TS when he was 14...he had developed facial, motor and vocal tics and it was really distressing. However, as he grew older and his acute anxiety became more contolled the more obvious tics have disappeared.

 

He's 21 now, and apart from a couple of teeny facial tics which I don't think anyone would recognise unless they knew, everything else has gone.

 

I do know that these kinds of tics can be very much related to anxiety, so that might be something to look at.

 

Hope you get the support and advice you need from the professionals.

 

Bid :)

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Thank you for the replies. Just hope I can get some idea what the problem is. The most annoying thing is not knowing!

And bid, thank you that is very reassuring to know :)

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Thank you. I clicked on that link and a page came up but I wasn't quite sure where to go from there :unsure: but I have been searching forums and information anyway so I suppose until he has his CAMHS assessment next month, I will just have to be patient.

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Thank you. I clicked on that link and a page came up but I wasn't quite sure where to go from there :unsure: but I have been searching forums and information anyway so I suppose until he has his CAMHS assessment next month, I will just have to be patient.

 

I can't help - but if you get any joy from anyone pleasew let us know. My DS is exactly the same, and I have now ben fobed off by his `paed, CAMHS and my GP. He's working with a neuro OT atm, so maybe she will come up with some strategies we haven't tried yet..... but can not him assessed/dx'd by anyone as those that can do the dx just say it is not their`area and fob me off onto someone else :wallbash:

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I can't help - but if you get any joy from anyone pleasew let us know. My DS is exactly the same, and I have now ben fobed off by his `paed, CAMHS and my GP. He's working with a neuro OT atm, so maybe she will come up with some strategies we haven't tried yet..... but can not him assessed/dx'd by anyone as those that can do the dx just say it is not their`area and fob me off onto someone else :wallbash:

 

That must be so frustrating for you :( I really hope you get some answers soon.

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Hi Lilypad

 

My son who is 12 was diagnosed as AS and Tourettes Syndrome when he was 9. He had almost the same 'tics'. Started with blinking, then throat clearing and grunting. We were worried about the throat clearing and were referred to an allergy specialist. We had private medical cover at that time so we saw someone quite quickly.

 

Blood tests showed that he was allergic to dust, pollen and cats (same as myself) and we were advised to get rid of out two cats. The problem with specialists like this is that they don't think of any possible cause outside their specialism.

 

Our son is high end AS and the school wanted to discuss how to keep him engaged as he was way ahead of the class. During that discussion they raised the possibility of him being AS (he was always quite quirky but we just thought it was his personality). They arranged for him to be seen at the school by local CAMHS. The confirmed the diagnosis of AS and after discussion confirmed the Tourettes. Apparently the definition of Touretts is realted to the period the tics have been occuring. If I recall correctly they stated that it was classed as Tourettes if the tics had been going on for over 3 months (maybe it was 6). They then went on to reassess him every year. The assessment was helpful but, to be honest, the doctor changed each year and little was offered in real support.

 

My son's journey with Tourettes has been a rollercoaster with new tics replacing old ones every few months. Some have quite been violent muscle spasms and others hardly noticeable. It helped getting the school on-side as they can help with the problem of other children not understanding and teasing. Having said that, it was only after he left junior school that he told us of poor behaviour from other children that left him in tears every day and , of course, combined with the AS made it difficult for him to cope. Certain teachers that he went to for support told him to "toughen up" and "stop being so sensitive". He never told us and I wish he had so we could have helped him.

 

We found that the tics were worse in the evenings as he tried to suppress them during the day and then 'released' the stored up force of them at night at home.

 

He is now at senior school and the tics are (fingers crossed) much more moderate. It also helps that he understands the Tourettes and can explain the tics to others. However, any stress does bring on the tics. But I would say that it does seem to get easier as they get older.

 

Good luck with CAMHS

 

Harry B

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Hi Harry. thank you very much for sharing your experience with me. I have always wondered if Tourettes syndrome can be comorbid to AS as I haven't heard of many cases.

Fortunately, my son's school is alot more understanding than some of the schools that people have mentioned on this forum. This morning has been a classic example.

My son was supposed to have an appointment at half 9 with CAMHS and they phoned me at 9:15 to cancel. This very obviously disturbed my son and he refused to walk back to school (we were halfway between his school and CAMHS - it's only a 5 min walk between the two places).

When we got to school, he was very upset because of this disruption (I have been telling him about the appointment for the past few days to prepare him) I had to ask for his class teacher to come and get him but first he ran out of the school, then he was clinging on to me and he was crying his eyes out. The headteacher also came out of her office and they were both really supportive and told him they'd go and read a book (to calm him down). I had to walk out of there and let them deal with him which I hate doing but I understand it's their job...

I just recieved a call a few minutes ago from the SENCO to let me know my son has settled down now. He also told me he has made a phonecall to CAMHS to complain about them cancelling the appointment at the last minute.

This is the second appointment they have cancelled in a row, the last time we saw them was in November and if they keep on doing this, i'm going to have a very upset child but still no closer to finding out what's wrong with him.

I know what happened this morning will probably affect him for the rest of the day, and his tics and behaviour will probably be worse tonight (it's a pattern i've picked up on).

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hi lilypad. i hope i can help. ask your gp for a referal to the neurology department. atkins and morley department St georges hospital london. proffesor mary robertson is in charge there and the leading proffesor in the uk. it took us a while to get an appointment but we got there in the end. dont let your gp put you. off insist. even if it is out of your area it is worth going as they are the best! early diagnosis is best. and then your child may or may not be given medication depending on the severity of the tics and how they impact life.

my Ds is really struggling with his at the moment and we are going to have to phone St Georges for an emergency appointment. good luck.

sarah xx

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