Support Group for Raising kids w/Tourette’s & Coprolalia

amother

Mon, Jan 29 2024, 1:04 pm

mha3484 wrote:

I have tourettes for the past 30 plus years. I tried many things as a kid/ teen. I loved the Doctor I saw but I dont think your in my city. But as a teen girl who was pretty self conscious, she was the nicest.

When I was growing up they were a great resource https://tourette.org/

Ty !
Do you have any suggestion on meds that can help Coprolalia ?
Or in general verbal ticks ?

mha3484

Mon, Jan 29 2024, 1:14 pm

The meds may have changed since I was in the parsha of taking them but not sugar coating, I hated how they made me feel. I had vocal tics like throat clearing, sniffing. My mother and I had an agreement that when the tics effected my functioning I took the meds anyway and if it was just vanity then I went to therapy to deal with having a good self image despite the tics. For me, I also learned to be more self aware about my triggers. Mainly hunger, stress and not sleeping enough. Being careful with those brought me down to a better baseline.

I have a lot of facial tics that I am so used to I don't even notice them. If anyone else does they don't seem to care and it never comes up in conversation.

Having a good doctor who I felt listened to me was really beneficial.

amother

Snowdrop

Mon, Jan 29 2024, 1:15 pm

amother Darkblue wrote:

That sounds exactly like pandas but ok Peace sign

Can you let her be?

Not everyone has PANDAS. She says her son has tourettes. End of discussion.

This is a classic example of people butting in where they shouldn't.
A: Ya, my husband has brain cancer. Looking for a support group.
B: Has he tried supplements?

Can't Believe It

amother

Mon, Jan 29 2024, 1:16 pm

mha3484 wrote:

Thank you for that !
So those kind of ticks my son has and are either controlled by meds or don’t bother us/ him enough
It’s livable
It’s more like the actual verbal ticks that are a massive problem in every day functioning.

amother

Mon, Jan 29 2024, 1:18 pm

amother Snowdrop wrote:

Right lol 😆.
But I am not really bothered .
I mean I can see how Pandas ticks & Tourette are lumped together
But I just need to find help & solutions

mha3484

Mon, Jan 29 2024, 1:19 pm

I was on clonidine for a while, risperidone, guanfacine, plus a variety of ADHD meds over the years and lexapro. My childhood was fun lol. But as an adult I think I have a pretty nice life.

I did not like feeling like I was in a fog which some of the Tourette's meds made me feel like. Like I couldn't find the words I wanted to say. My brain just felt fuzzy. Its a cost benefit analysis of which is worse. I also found therapy with the meds to be really positive.

amother

Darkblue

Mon, Jan 29 2024, 1:21 pm

amother Snowdrop wrote:

Sure, I'll butt out if OP asks me to.

But it's not like your analogy at all. It's like someone saying my husband has huge rages, is losing his balance all the time and complains of blurry vision and someone says did you check for a brain tumor. [Except brain tumor can easily be ruled out with testing, Pandas can't.]

Tourettes is a set of symptoms. Pandas would be the cause.

We've cured tics including verbal ones by treating pandas and I honestly just want to help, but this will be my last post if OP doesn't want to go down this route.

amother

Mon, Jan 29 2024, 1:24 pm

mha3484 wrote:

Right Same story here , I am shocked same meds are still around
And that they haven’t found anything better
For combination of all his issues ,( not just Ticks )
My son is on Intuniv , Clonodine & Risperdal & Lexapro at times diff other stimulants for ADHD & we are still in a pretty bad place .
A bit off topic, is there any particular ADHD stimulant that worked for you , that helped your ADHD & didn’t make ticks worse ?

amother

Mon, Jan 29 2024, 1:32 pm

mha3484 wrote:

I tried probably all of them that existed from age 6-20. Also Strattera when it first came out. But that was a huge fail for me. I was diagnosed as unmedicable at one point. They all helped to a certain extent but nothing 100%. I think they all were basically the same.

Wow that’s really crazy. I can’t believe they couldn’t find anything.
I am also thinking we might not have a stimulant that works , and school will end up a fail.
Every stimulant he tried so far was a disaster
But even that isn’t my primary problem
It’s more like we can’t function w/ his verbal ticks
Can I ask , how are you as an adult ? As far as ticks ? Getting education ? Work ?
We’re you able to get by w/ out stimulants ?

mha3484

Mon, Jan 29 2024, 1:44 pm

As an adult, I have a good life. I have friends, a job I am good at. I don't feel like my life is different from anyone else.

I am lucky my mother got me a lot of help starting in my earliest years and I was medicated from K- College so I learned a lot of functional skills that I could implement because I was able to absorb it. Hashem also gave me a really good memory and a yekkish side of the family which provides some balance to the ADHD symptoms. My father with ADHD is obsessively early to everything lol. Some how its so engrained in him, it balances out the other stuff.

I was always behind everyone else socially, impulsive, less mature. Towards the end of high school like end of 11th beginning of 12th, things got better for me. College I had kind of wild period but I mellowed out after a few years and learned a few hard lessons.

I think after formal schooling was over, I was able to find a career that was suited my skills and abilities. I figured out what I was good at and NOT good at. Also same with running my house. I just tried a lot of stuff until I figured out what worked for me.

I am happy I got married a little older I was in my mid 20s. Sorry if this is a ramble.

I read a theory many years ago from an ADHD specialist that called ADHD a developmental delay vs a life long disorder and I feel like for me this was true. I found that a lot of things just took me longer to get then everyone else but I think with the right help I got there it and do just fine. It just was a different time table.

amother

Mon, Jan 29 2024, 1:51 pm

mha3484 wrote:

Wow you sound Amazing !
Good for you !
Oh how I wish my son will be able to do even half of that
He is medicated , but soooo not there yet
Biggest issue currently are Extremely verbal inappropriate ( socially & vulgar ) verbal ticks .
Any ideas ?

amother

Chocolate

Mon, Jan 29 2024, 1:58 pm

There's a book, called No More Tics by Sara Chana Radcliffe. Was BH successful with my child who has mild tics (coughing, blinking) she claims it can help with all kinds of tics and it is very easy to do with no side effects and not pricy. Highly recommend you at least give it a try.

Hope you find a support group too!

amother

Steel

Mon, Jan 29 2024, 1:58 pm

mha3484 wrote:

Can I just say you such an amazing poster and have been so helpful with advice for children struggling and seeing you post this makes me love you even more?! 🙈

I have tics too and seeing how confident you are is amazing.

Sorry op no advice.

I have undiagnosed tourettes.

mha3484

Mon, Jan 29 2024, 2:14 pm

Wow that's so nice. I feel like hashem gave me some big challenges but also a lot of positive growth. If I can pay it forward, it really makes me feel like I didn't go through all this for nothing. Also to show people that the earlier you help your kid the better. I would be nowhere without getting diagnosed in kindergarten when my school offered free screenings. My mother trusted her instinct something was not 100% and she didnt ignore it.