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

amother

Crocus

Mon, Jan 29 2024, 3:50 pm

mha3484 wrote:

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.

You give me so much chizzuk! Although part of me is holding on to the small hope that he will outgrow it completely at the end of puberty (we missed the beginning of puberty deadline), reading what you’ve been through and how amazing you are gives me chizzuk that he can have a normal life, job, marriage etc. I hope he will appreciate all of the drs, meds, therapies and money that we put into him. I worry sometimes that I push him too hard and he will throw in the towel one day.

amother

Mon, Jan 29 2024, 4:18 pm

amother Crocus wrote:

Another Tourette’s mom here! Op I feel for you. We’ve been on all of those meds plus more. Had a really really bad vocal stage like you’re going through now plus many other tics that were so terrible that he couldn’t be in school. Bh he’s under control now. Holding my breath and praying that the other shoe doesn’t drop. I would love a support group if you come across one!

Pls help a desperate mother out, what combination of meds helped at the end ?
For verbal if it makes a difference not vocal ?

amother

Crocus

Mon, Jan 29 2024, 4:30 pm

amother OP wrote:

Pls help a desperate mother out, what combination of meds helped at the end ?
For verbal if it makes a difference not vocal ?

I’m not sure what you mean by verbal not vocal? I thought all verbal tics (sounds or words) are called vocal and all movement is motor? Correct me if I’m wrong.) Right now he is on a combination of clonedine and Abilify (he was on both of those in the past with different meds, possibly even together, I can’t keep track anymore it’s been so many years). He also takes magnesium and folate.

amother

Mon, Jan 29 2024, 4:56 pm

amother Crocus wrote:

Yes you are right , they are both called Vocal. I just refer to the sound once as vocal , and actual words as verbal
Ty for meds info . Yeah we did try that combination before , and didn’t work well enough & had side effects.
Best so far has been Respiradol, so that’s what we are doing .

amother

Smokey

Mon, Jan 29 2024, 5:06 pm

mha3484 wrote:

This is so encouraging to read. I like you a lot as a poster. And I enjoy a lot hearing your spin in things.
I have a 10 yo with adhd (combined hyperactive and inattentive) with taurettes.

I worry a lot how she will be a confident fully functioning member of society. You have really assuaged my worry and concern.

(To the previous poster, yes, she has/did have PANS with 500 more symptoms and diagnosis. But has been in treatment for yearssss. Is in remission now bh. But at this point. The doctors and I have come to the conclusion that at this point it is an acquired brain injury. Although hopefully iyh she will one day heal, I have come to terms with the fact that her adhd and turettes are here to stay.)

amother

Crocus

Mon, Jan 29 2024, 5:07 pm

amother OP wrote:

We did respiradol for a while but it didn’t help much and had awful side effects. Did you ever do gene testing? It can tell you if there are any meds that are more likely or less likely to work.

amother

Mon, Jan 29 2024, 5:28 pm

amother Crocus wrote:

We did respiradol for a while but it didn’t help much and had awful side effects. Did you ever do gene testing? It can tell you if there are any meds that are more likely or less likely to work.

No we didn’t do gene testing . Something to think about . So BH Respiridal is working somewhat , but then the dose wears off & we go up .
Lexapro also helps somewhat.
People that are all crying Pandas , don’t understand how prevalent Tourette’s is in Jewish genetics. My husband & his father both have tics ( although much much milder ), so I for sure know we aren’t dealing with Pandas .

amother

Crocus

Mon, Jan 29 2024, 5:45 pm

amother OP wrote:

Same here. I have some mild tics as do other family members. It’s definitely genetic and some just unfortunately get it much more severely. I hate when people shout pandas on every Tourette’s thread that opens up. It’s not the same and you don’t need to prove your point to us when we know what we’re dealing with.

Regarding gene testing, it cost me $399 when I did it a while back and gave me insight into what meds are less likely to work, which would have side effects etc. I found the side effects listed to be accurate to what I experienced. I can give you more info if you are interested.

amother

Ghostwhite

Mon, Jan 29 2024, 6:17 pm

I don't believe I have tourettes but I have what might be described as tics, I'm not sure, like lip biting. My ADHD meds can make my lip biting way worse. When I googled that I learned that some describe that as tics. I also found that people recommended magnesium chelate for that. It really helps me, but only a very specific one. It's nature's way, magnesium chelate. I've tried other "fancier" magnesiums and not only don't they help, some make it worse. Maybe it's the other vitamins or minerals in them. Nature's way is pretty cheap at any local pharmacy.

amother

Crocus

Mon, Jan 29 2024, 6:21 pm

amother Ghostwhite wrote:

Stimulants are known to make tics worse so it makes sense that your adhd meds make it worse. Have you tried non-stimulants for adhd?

amother

Ginger

Tue, Jan 30 2024, 1:17 am

amother OP wrote:

are you on facebook. I have found a lot of support groups there to be helpful for many different health issues, I'm sure they have for Tourette's. Now for advice you didn't ask for Wink

A lot of times the ADHD meds increase tics (happened for my son).

Did you ever try round the clock ibuprofen to see if that helps? if it does then it's likely from brain inflammation.

I would also look into alternative medicine like homeopathy. Good luck!

amother

White

Tue, Jan 30 2024, 2:20 am

Another mother here with son horrible vocal tics. Now he is at twisting his shoulder, pulls his shirt. Scrunches his nose. Still does vocal and facial tics.
Medicine didn't do anything for him...including supplements. Nothing worked. Every time I thought it stopped, he got them again.
Tried Radcliffe's book. Didn't either help.
Took various types of antibiotics over a long time (not a solution anyway)
Pandas was ruled out. I just wonder how ppl say they treat them..