Son diagnosed with Tourette's Syndrome

[Boots]

My youngest son has just been diagnosed with Tourette's Syndrome.

He does not want me or his Dad to tell anyone other than immediate family. This includes only one of his grandparents and none of his aunts, uncles or cousins.

He also does not want me telling my boss. The only thing I am allowed to say to my boss is that we have a diagnosis and that we are waiting for further testing appointments.

This leaves me with nobody to talk to....

 

[Boots]

I understand his want and need to keep this private and I will respect his wishes

 

[Kimmio Laughterlove]

Sorry to hear, Boots. Maybe once he’s gotten used to his diagnoses and living with it, he’ll be more open about it. How does it affect him day to day?

 

[Boots]

He says that his ticks annoy him.

He has had two vocal ticks since he was in elementary school. He just entered high school this year.

His vocal ticks are clearing his throat and occasionally his voice would slip into a lower growely voice. These we thought were due to his asthma.

This is the first time he went to our family doctor on his own. He asked if there was anything else we could do to help with the vocal ticks then. At the time we didn't know that that is what they were.

It was at that appointment that they notice the facial ticks. As his parents neither I or my husband saw them until they were pointed out to us.

The lucky thing is he has never been bullied, is a straight A student and the teachers have never "called him out" on his ticks.

Once we are able to tell people I expect to hear alot of "yeah, of course he has Tourette's. We thought you knew?"

 

[ChemGal]

Sounds like he has already been able to mask it to what's socially acceptable fairly well. Throat clearing is something many do.
Has he been finding holding them back at school or other public places to be stressful?
Age wise it sounds like he may be at a time where they are worse too, was that part of the reason for the appointment?

 

[Kimmio Laughterlove]

He says that his ticks annoy him.

He has had two vocal ticks since he was in elementary school. He just entered high school this year.

His vocal ticks are clearing his throat and occasionally his voice would slip into a lower growely voice. These we thought were due to his asthma.

This is the first time he went to our family doctor on his own. He asked if there was anything else we could do to help with the vocal ticks then. At the time we didn't know that that is what they were.

It was at that appointment that they notice the facial ticks. As his parents neither I or my husband saw them until they were pointed out to us.

The lucky thing is he has never been bullied, is a straight A student and the teachers have never "called him out" on his ticks.

Once we are able to tell people I expect to hear alot of "yeah, of course he has Tourette's. We thought you knew?"

Good for him for going on his own. I hope he’s able to open up to people soon, too.

 

[Mrs.Anteater]

Why would you need to tell your boss?

 

[Mrs.Anteater]

 

[Mrs.Anteater]

You can find the whole episode on CBC Gem, its worth watching

 

[Kimmio Laughterlove]

I learned from that series. @Mrs.Anteater actually I think you pointed it out before on the Netflix thread otherwise I wouldn’t have known about it. Thanks for that. It’s a good series. It was my first introduction, that I’m aware of (unless i’ve met people with ticks I didn’t recognize as ticks or that they were Tourettes caused), to Tourette’s...or at least seeing people with Tourette’s and hearing them explain it.

 

[Boots]

Why would you need to tell your boss?

Son is seeking treatment with medication that is requiring further appointments plus we are still waiting for another medical test to be performed. These will require me to request time off.

Plus we are kinda friends.

My boss is very understanding about privacy and will understand me holding back information. Just would be nice to talk to someone face to face.

 

[Boots]

Has he been finding holding them back at school or other public places to be stressful?
Age wise it sounds like he may be at a time where they are worse too, was that part of the reason for the appointment?

Yes. He finds it very stressful. The relief I saw from him when the doctor told him to stop trying to hold them back made me cry.

I didn't realize he was suffering like that.

The reason for the appointment was for a physical. It had been awhile. I booked it for him and told him to start thinking of things to talk to our family doctor about. Like his asthma because we were not going to go in with him.

He mentioned that the growely speech was really annoying him.

 

[Boots]

The medication he is trying might not work and I am a little worried about side effects.

I told son that I love him and his ticks. His ticks are a part of him and I am use to them. If the medication is going to work I will miss that part of him.

He told me he doesn't like having them.

 

[Kimmio Laughterlove]

It’s great that you are accepting no matter what. I guess it must be even harder for him at his age, socially. Is his voice changing, too? Could that be part of it, or making it harder, or is ticks alone?

What are the possible side effects you are worried about?

 

[KayTheCurler]

That sounds like a tough spot for you and your son to walk through right now Boots. Hopefully things will get easier as you both find coping strategies or whatever it is that you need.

Over the years several people have used this place for their private chatting that isn't happening in 'real life'.

 

[Boots]

It’s great that you are accepting no matter what. I guess it must be even harder for him at his age, socially. Is his voice changing, too? Could that be part of it, or making it harder, or is ticks alone?

What are the possible side effects you are worried about?

It’s great that you are accepting no matter what. I guess it must be even harder for him at his age, socially. Is his voice changing, too? Could that be part of it, or making it harder, or is ticks alone?

What are the possible side effects you are worried about?
[/QUOTE

Yeah, his voice is changing. I don't think it's making it harder for him though. The vocal ticks have been present for years.

The big side effect that concerns me is the lowering of blood pressure.

 

[ChemGal]

Yes. He finds it very stressful. The relief I saw from him when the doctor told him to stop trying to hold them back made me cry.

I didn't realize he was suffering like that.

The reason for the appointment was for a physical. It had been awhile. I booked it for him and told him to start thinking of things to talk to our family doctor about. Like his asthma because we were not going to go in with him.

He mentioned that the growely speech was really annoying him.

A few people in my extended family have Tourette Syndrome, like 2nd cousins, so not people I see all that often. I was also aware of a teacher at my high school who had it.
Even with 'permission' to allow the tics to occur I think most people tend to hold them back/minimize them and then need to release for a while when it feels safer to do so.

Hopefully the medication helps. It may take some time, but with this being new in terms of naming it, informing the teachers or principal (or designed assistant principal if his school is huge like mine was) may be useful. If he's allowing the tics to occur that may become something that is seen as a problem in class, especially during tests.

 

[Boots]

A few people in my extended family have Tourette Syndrome, like 2nd cousins, so not people I see all that often. I was also aware of a teacher at my high school who had it.
Even with 'permission' to allow the tics to occur I think most people tend to hold them back/minimize them and then need to release for a while when it feels safer to do so.

Hopefully the medication helps. It may take some time, but with this being new in terms of naming it, informing the teachers or principal (or designed assistant principal if his school is huge like mine was) may be useful. If he's allowing the tics to occur that may become something that is seen as a problem in class, especially during tests.

He doesn't want the school to know. If it becomes a problem then he will inform them. I sure wish we could say something before it comes to that though.

He just doesn't want to be treated different.

 

[ChemGal]

He doesn't want the school to know. If it becomes a problem then he will inform them. I sure wish we could say something before it comes to that though.

He just doesn't want to be treated different.

It's early in the year. Something that can be revisited before midterms start popping up.

 

[Nancy]

The teen years are tough in so many ways. Your son will have an extra challenge to deal with but it sounds like he is a master at developing coping strategies. He's lucky to have a loving a supportive parent like you Boots! And we're here for you to talk to!