Help for my 22yo son that suffers from severe Tourette syndrome

Posted by christinakelley411 @christinakelley411, Feb 24 9:35pm

My son is in FL..I’m an otr truck driver so rarely there. His turrets has gotten so bad he has full body twitches, sweating non stop, can barely sleep because constantly moving and barely can catch his breath at times. He has no insurance and barely can afford basic necessities because it interrupts his daily activities like working when it gets really bad.

@christinakelley411 Welcome to Mayo Clinic Connect. I’m very sorry your son is having such difficulty with his Tourette’s Syndrome. As a parent, watching your son struggle so, must have you feeling helpless. For your son, not being able to work or have a full and active life is tragic.

Your son is 22, have his symptoms worsened over the years? When was the last time he’s been seen by a neurologist?
This is not my area of experience so I’m hoping other members in our Connect community can offer some suggestions. In the meantime here is a link to Mayo Clinic’s site on Tourette’s Syndrome and appointments with the clinic.
https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/symptoms-causes/syc-20350465

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Hi @christinakelley411, I add my welcome. I moved your message to the Brain & Nervous System group here https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

I did this so you can connect with other members talking about Tourette syndrome in children and adult children like @indreni77 @grandmar @kk and @nire.
I have the same questions as Lori. Have his symptoms worsened recently? What triggers them getting worse?

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@colleenyoung

Hi @christinakelley411, I add my welcome. I moved your message to the Brain & Nervous System group here https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

I did this so you can connect with other members talking about Tourette syndrome in children and adult children like @indreni77 @grandmar @kk and @nire.
I have the same questions as Lori. Have his symptoms worsened recently? What triggers them getting worse?

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@christinakelley411
Hi!
Welcome to the group!
My granddaughter was diagnosed with Tourette's Syndrome 2 years ago when she was 8 years old.
Her symptoms were:
rapid blinking like something was in her eyes;
constant sniffing of her nose when there was no mucus;
throat clearing;
her chest would twitch when breathing;
arm twitching
My daughter took her to see a neurologist.
The neurologist did a number of tests to make sure there was no brain issues such as tumors. Thank God there weren't any.
At the same time she was diagnosed with Tourette's, she was also diagnosed with ADHD.
Her psychiatrist put her on meds for the ADHD AND the ticks.
She definitely does much better with her ticks when she is calm and not stressed.
When she is agitated and/or stressed, the ticks get much worse.
Besides the meds, she also went for behavioral therapy to help her learn coping strategies when she is upset or stressed.
Hope this helps!
Ronnie

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@grandmar

@christinakelley411
Hi!
Welcome to the group!
My granddaughter was diagnosed with Tourette's Syndrome 2 years ago when she was 8 years old.
Her symptoms were:
rapid blinking like something was in her eyes;
constant sniffing of her nose when there was no mucus;
throat clearing;
her chest would twitch when breathing;
arm twitching
My daughter took her to see a neurologist.
The neurologist did a number of tests to make sure there was no brain issues such as tumors. Thank God there weren't any.
At the same time she was diagnosed with Tourette's, she was also diagnosed with ADHD.
Her psychiatrist put her on meds for the ADHD AND the ticks.
She definitely does much better with her ticks when she is calm and not stressed.
When she is agitated and/or stressed, the ticks get much worse.
Besides the meds, she also went for behavioral therapy to help her learn coping strategies when she is upset or stressed.
Hope this helps!
Ronnie

Jump to this post

Thank you. He was on medication when he was younger for both turrets and adhd as well. One medication made it so much worse. He's not wanting to do medication again. His has become so bad in the last year I don't even know how he functions. He amazes me sometimes but I need to see if behavioral therapy is an option for where he lives plus he doesn't have insurance besides I think state insurance. Thank you

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@loribmt

@christinakelley411 Welcome to Mayo Clinic Connect. I’m very sorry your son is having such difficulty with his Tourette’s Syndrome. As a parent, watching your son struggle so, must have you feeling helpless. For your son, not being able to work or have a full and active life is tragic.

Your son is 22, have his symptoms worsened over the years? When was the last time he’s been seen by a neurologist?
This is not my area of experience so I’m hoping other members in our Connect community can offer some suggestions. In the meantime here is a link to Mayo Clinic’s site on Tourette’s Syndrome and appointments with the clinic.
https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/symptoms-causes/syc-20350465

Jump to this post

Yes his symptoms have worsened drastically as a matter of fact in just the last year. Was hoping there are some home remedies or exercises that could help him. Thank you

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@christinakelley411

Thank you. He was on medication when he was younger for both turrets and adhd as well. One medication made it so much worse. He's not wanting to do medication again. His has become so bad in the last year I don't even know how he functions. He amazes me sometimes but I need to see if behavioral therapy is an option for where he lives plus he doesn't have insurance besides I think state insurance. Thank you

Jump to this post

@christinakelley411
Good Morning
So sorry I was not able to help.
Yes, we were warned that some of the meds for ADHD could worsen the Tourette's.
Therefore the progression of meds were done very slowly.
I know that at one time, there were hospitals that offered therapy for people without insurance.
It was not free, but they worked on a sliding scale.
Just a thought.
Good luck!!!!!!!
Ronnie

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