Hi! Newbie here I have Ts
 

Yes I have Ts. Head jerking neck ticcing and shoulder shrugging is my way of life. I would love to meet people with the same condition lets talk!:):)

How do you deal with your tics
 

Hi! I have some questions. How do you deal with your tics in your daily life? :) As for me, gum is helping me a lot when it comes with head jerking and sleeping eventually when I get home.

Hi and welcome

My son has TS. It was hard when he was younger but he is in his 20s now and things are very much better.

I think you may like these 2 websites to learn more about TS and how to cope better with ticcing

Life's A Twitch

and
Tourette Syndrome Plus

My son does better with having whit noise in the background for sleeping and also relaxing in a tub of Epsom salt before bed.

I second the Epsom Salts baths...that is magnesium sulfate. My son has been using these since he was fist dx age 10...so 14 years.

Kitkath, if you are interested in natural ways that can help with TS, I have a thread about what helped my son http://neurotalk.psychcentral.com/thread1145.html

I am 23 and I've "suffered" from Tourettes my whole life. I discovered this forum when recovering from a nasty concussion and inner ear trauma and noticed it has a wide range of conditions, including tourettes. I have a neck, face, hand, and leg tics. I've sort of conditioned myself to repress the tics when in a social situation and let them all out when I am alone. The feeling you get when you repress these tics is called a premonitory urge and can cause anxiety if held in too long. But I fight through them. I dont let anything stop me. I am an accomplished musician, athlete, and I am working towards a double Bachelors in Economics and History and have plans to attend graduate school to earn an MBA. This is a hard disability to live with, but a solid attitude and a focused mind, it cant hold you back.

Hi
 

My 14 year old son suffers ocd and tourettes he head shakes nods blinks nose twitch says inapropiate comments etc it would be nice to hear from you all and does any one suffer anger meltdowns? Thanks

Hi Katy,
Welcome to the NeuroTalk Support Groups. Here is some info. that may be helpful to you. It is actually not uncommon for children who have comorbid conditions as well as their tics to have problems with meltdowns. Look for particular triggers, e.g. is he more prone to having these meltdowns when he gets home from school.

Rage Attacks or Storms - Leslie Packer TS "Plus"

Overview of "Rage Attacks" - Leslie Packer TS "Plus"

Let us know more and perhaps we can make some suggestions. My son had this problem when he was young (adult now) but he is also on autism spectrum and in retrospect I see how that was a huge impact. His days in school were pretty darn stressful for some years there when he was young. He spent a lot of his time and energy trying to suppress his tics. He did a lot better when certain modifications were put in place to make his days less stressful. Long story.

Let us know more.

Hi lara
 

My sons meltdowns r at school an home school report it can take upto 40 mins to calm him down .he rocks, pulls his hair,punches walls, bites himself etc He has autistic traits but im convinced he has mild autism .Reports read like he is autistic too.but school r hit n miss on there replies to questionaires but i continue to oppose them.He also has sensory issues as in clothes tags get ripped out an chewing drink tops doesnt like light touch and loud voices.He also has bowel issues as in he often cant get to toilet in time and starts to soil but on med 4 that he also takes 150 mg of setriline 4 his ocd but shrink may b mixing a new drug in too.his ocd fear is death an cancer deseases and germ.He has mild development delay also.He has had speech n language on n off thru out the years.hope this is enuf info if not u can ask me specific questions thanks so much 4 your reply i appreciate u time xx

Hi again Katy,
Well, he certainly has a lot going on there. I hope you have good support for yourself from family and friends as you try to figure this all out.

Just from reading your message, my suggestion would be to follow your instincts and ask for a multidisciplinary evaluation for Autism Spectrum condition if that's never been done. I'm no expert, but I was in a somewhat similar place myself years ago.

If he has mild developmental delay then that may have blurred the lines a bit and the only way to truly know is for him to undergo the right assessments if they've not been done. e.g. if he has difficulties with speech and language that may affect the way he communicates and doesn't necessarily mean he has autism so the professionals may be overlooking other things that you observe.

Frankly, when my son was finally correctly diagnosed it was total and absolute relief as so many things made more sense. Have you spoken to his Psychiatrist and Speech and Language specialist about your concerns that he may be on Autism Spectrum?

If he does have Autism, and he's diagnosed correctly and he's set up in the right educational environment with people who understand Autism in children and teens, then he can only flourish. It sounds as if he's struggling right now, so my heartfelt suggestion is to go with your gut feelings and if you feel he's not been diagnosed correctly or is not receiving particular modifications or direction educationally or medically, then go for it. The sooner the better if he is indeed on Autism spectrum.

I see you are in the UK...
What is Autism from Autism.org.uk

Diagnosis What to Expect

There are other links on that UK site that talk more about education and schools etc..

Education Schools

p.s. another thought. Sorry if there are too many questions, but I wondered who actually diagnosed your son with Tourettes Syndrome? Was it a Psychiatrist or Neurologist. I also wondered if he had any phonic/vocal tics as well as the motor tics you mentioned. e.g. List of Common Tics

Hi lara
 

Psychtrist diagnosed him tourettes he does have mild vocal tics but more physical tics.he has had a short time wiv cbt but ash couldnt cope wiv it so they knocked it on the head.Here in the uk speech languagr/ educational psyhcoligists wont normally comment on what they think cos they wont step on the mental health teams toes. But one e/p observed him in a class an she said she saw alot of autistic traits in him. And the speech n language reports also sounds like he is too but no one will speak up and support me on this. He gets upset if there are weather warnings he gets upset if a supply teacher takes over his regular teacher or she doesnt have the same teaching style or if we av a takeaway meal he expects it to happen nearly evrry night. He gets obsessed easy wiv people and situations. How do u think its best to deal wiv these horrible meltdowns lara? And tbh i dont av much support i deal wiv it on my own cos hubby dont get it. Hugs x

:hug:
Sorry you're doing this on your own. Sometimes people don't 'get it' because they don't understand it or don't want to understand it.

Meltdowns. That's the really difficult question. It sounds as if a lot of the meltdowns come from his rigidity and dislike of change and routine. You really need to get some professional advice about this Katy. It is too difficult to deal with on your own esp. now your son is older. It's hard for people to understand that it's not just someone having anger management issues, it's far deeper than that. Keeping your son safe and keeping yourself safe and family safe during an episode is paramount. I did find that backing out of situations was a positive option. It sort of de escalated the episode. It's impossible to stop those changes in his routine and as he gets older you'll find he'll adapt more, but in the meantime you need to get some help.

Here is a pdf regarding cycle of tantrums rage and meltdowns. It has some helpful info. in it, Katy.

It's got a few good tips there even tough it appears very basic. Don't forget there are suggestions in the TS ones in the post up above... from the TS Plus site. This one below is specifically regarding Autism though.

http://www.researchautism.org/resour...tdowns_002.pdf

Lara
 

Thankyou so much u av bn very helpful i appreciate u time answering my questions thanks x

:(:(
 

Ash had another meltdown he was isolated for saying inapropiate comments to kids in his class and shouting at teacher he then proceded to shout fxcking bxtch to another teacher nxt day they isolated from his fav lesson he went into meltdown and punched the walls hence school rang and asked me to take him to hospital.Luckily it looked worse than what it is .but everytime ash visits hospital its normally cos he punched a wall:(

Hi Katy, Sounds just awful. :(

It's very difficult for me to know what to suggest with the situation so bad and knowing so little.

What happens at the hospital when you go there with him?

This type of behaviour is really not related to his tics/TS and because he's only currently diagnosed with TS and OCD, I'm at a loss to know what his treating Psychiatrist is thinking.

Have you had sit down meetings with the school staff at all, just you and hubby, and I also wondered if he's in a regular classroom setting?

I really can't say it more clearly than to say this sounds like CRISIS time and I'm wondering what type of support agencies there are in your area where you can get professional help to sort out so many of these concerns you have... like your concerns he is on Autism Spectrum. Because I'm not in the UK, I have no idea on how the system works but I wonder if you have access to centres where you can get some help and guidance. We can do that here where I live... either with private practitioners or in Youth and Mental Health Services which are often run out of major hospitals. You also might find that a Psychologist could be more helpful than a Psychiatrist in your son's situation. It's one thing to dish out medications but there's so much more that sounds as if it's being neglected.

Edited to add:
http://www.tourettes-action.org.uk/8-find-support.html
http://www.tourettes-action.org.uk/10-ta-groups.html
TS Support Groups - Eng, Wales and Northern Ireland

I also just found this link below on that AutismUK site I showed you earlier.
Even though you don't have an Autism diagnosis and that might not be what is going on for him at all, but considering your concerns about Autism, it wouldn't hurt to talk to someone from the support groups.
http://www.autism.org.uk/directory

Thanx 4 the links lara
 

Ash is under the child mental health team and its convincing him he also has mild autism .I have rang them and left a message to ring me.School got a autistic lady in to give them at school some ideas even thou they wont say hes autistic he also got invited in the summer to a social skills group .as everyone says he has poor social skills.It really is like hitting brick walls convincing these people at the child mental health alot of obseervers have said they have seen the traits but nobody will come up against the child mental health team and support me.I think if they give there opinion they could get in trouble.sighs....

I had the same difficulty here actually. Lack of knowledge about Tourettes at the time made things extra hard. The doctors were lumping absolutely everything under the TS umbrella and that wasn't helping my son or us as parents. Fortunately we have a really great Asperger's specialist near us and seeing him was the turning point. It's just a pity it took so many years.

Parenting a child on autism spectrum wasn't/isn't the same for me as parenting a child without. Absolutely different.

Keep a notebook. You don't need to make a detailed daily diary, but write down things somewhere that you feel have been important even if you can go back to when he was little. Having all of those things together on paper in one place can help later on if needed.

There are so many excellent resources online these days with information, but you just need to have the time to read it all and that's probably impossible for you right now.

Keep talking with school.

Let us know how your son and you are getting on there.

P.S. Also do remember that regarding other people's "opinions" like the mental health people or whomever... it's not about "opinions". They need to do the proper evaluations! You are his mother. They need to listen to you.