I posted this thread in the Tourettes section but I am also posting it here with the hope that more people will see it. I hope that is not a forum no no. My nephew is an adorable 10 year old who has Tourettes and is suffering horribly from tics. I also think he has ADD and a mood disorder. His tics are severe and constant. He has missed so much school because of his tics that he has chosen to repeat fifth grade next year. His self-esteem is really low and he has found it difficult to make and keep good friends.

Could anyone please give me some advice on treatment, both conventional and alternative for the tics?

I don't know what meds he is on currently but whatever they are they are not working. His parents (my brother and his wife) have found a therapist that my nephew sees regularly and also take him to a special massage therapist. I know that they have tried acupuncture. I'm not sure how effective that was (don't know if they only tried it once or if he is going regularly but his tics are still really bad so I'm assuming it didn't work immediately). I read one of the other threads about tourettes and meds and one person said,

"I went to a seminar on Tourettes In January 2003. One of the things that they talked about is that if a person as Tourettes and other conditions as well, it is important to treat the disorder that is worse before actually treating the TS. For example, if you have OCD and ADHD, and your OCD causes you more problems than your ADHD or your Tourettes, it is best to treat the OCD"

I'm almost certain my nephew has add and a mood disorder but his parents have been reluctant to accept this so he is not treated for either.

Is there something that has worked for you or someone you know with severe tics? PLEASE write to me and share. I am interested in finding anything that works, conventional or alternative.
Thank you!

Also, we live in Olympia, WA and would travel to Seattle if you know of a good doc for tourettes. Please let me know,
Thanks!

I too am looking for info about tourettes treatments. Sorry to hear about your nephew. He's lucky to have an aunt who obviously cares so much about him!

Start with these. Then talk to the local TSA chapter, maybe attend a support group, and get recommendations for a doctor who has experience with Tourette and ADHD.

TSA: http://www.tsa-usa.org/
Local TSA Chapter: http://www.tourette.net/wa/
More stuff: http://www.tourettes-disorder.com/

I was on the other side of your fence, growing up with Tourette and ADHD. I'm happy to answer almost any question you might have. Heck, I'll answer your nephews questions too, if he has any. If I don't know the answer, my mother might. She was where you are, and we both managed to survive, so she must have done something right. :)

Did you ever try acupuncture? How about vitamin/mineral supplements?

Thank you blueroo! I was wondering how middle and high school were for you? Did you also have severe tics? I am so worried about how people will treat my nephew as he gets older. I know he is really embarassed about his tics. Also, in my reading about Tourettes, I keep finding reports that say tics get worse with age, is that true? I can't imagine them being worse than they are now. He has this one tic where he rubs the top of his pants against his lower stomach. He does it so often he has worn away the skin and it is just this raw exposed sore! He can't stop. He has other tics that cause his whole body to convulse. They happen non stop for hours and he just collapses and cries from exhaustion and pain.

Thank you so much for writing to me and offering your help. My nephew is very sensitive about talking about his tourettes but if he ever has any questions, I will write to you.

Thanks
Jackers

Did you ever try acupuncture? How about vitamin/mineral supplements?

I don't have much optimism for acupuncture. Most scientific studies show that it can affect Endorphin based neurotransmitters which is great if you are trying to relieve some pain, however that isn't going to be much help with the overly-sensitive dopamine receptors we believe cause Tourette's Syndrome. In fact, it might make it worse. Endorphin release can agitate dopamine release, and as soon as that dopamine hits those sensitive receptors the ticing is going to come.

I do take plain multi-vitamins and some omega-3 supplements, however those are to fill in the gaps in my diet. Poor diet and sleep does lead to physical and mental stress, but even a perfect diet can't change how sensitive certain dopamine receptors are in the Tourette brain.

That isn't to say that there isn't any hope for severe tics, I'm just very doubtful that any therapy which doesn't directly address the dopamine sensitivity can do anything useful.

Jackers,
There's no question about it, middle and high school students can be cruel when it comes to dealing with differences. In my experience, people who knew I had tourettes were fairly decent, but when my tics were bad, some of my friends had difficulty not being embarassed when we were in public. When I was in elementary school I had a great teacher who did a lesson on differences and invited me to tallk about what it was like to have tourettes (she's probably the reason I became a school psychologist). At that time, the kids in my class were very supportive and many of them went on to high school with me and I think they kept that experience with them. It helped, but in high school my biggest problem was the depression end of my bipolar disorder. Talk about your taboo topics, people are not very supportive about any kind of mental illness, in my experience that is. To this day I regret telling anyone about being bipolar. It always came back to bite me in the ***. I share that with no one.

Thank you blueroo! I was wondering how middle and high school were for you? Did you also have severe tics? I am so worried about how people will treat my nephew as he gets older. I know he is really embarassed about his tics. Also, in my reading about Tourettes, I keep finding reports that say tics get worse with age, is that true? I can't imagine them being worse than they are now. He has this one tic where he rubs the top of his pants against his lower stomach. He does it so often he has worn away the skin and it is just this raw exposed sore! He can't stop. He has other tics that cause his whole body to convulse. They happen non stop for hours and he just collapses and cries from exhaustion and pain.

I can't lie to you, unfortunately. School was hard. I did have moderately severe tics. Among others there was a terribly loud screeching quack noise as well as rhythmic drumming on any hard surface with my poor bruised knuckles. For a few years in middle school I took medication. It did help, but it also made me constantly drowsy. I slept during a lot of classes, but managed to pass them anyway. I quit the medication myself at the beginning of high school, and the ticing was awful. I spent far more than my fair share outside of the classroom so the rest of the class could do their work.

That said, I turned out pretty well in spite of it all. I had friends in high school who were mature enough to not make a big deal of the tics. I did most of the normal things stupid teenagers do. I graduated, went to college for a while, and now live a relatively enviable adult life. The best thing I've done for my Tourettes was to stop caring about what negative and immature people thought. Some people will always let their mouths run and it isn't worth taking them seriously. Unfortunately, that's a pretty lofty philosophy to expect a 10 year old boy to embrace. Just make sure he knows that he is supported and loved, and help him do remarkable things. There is no better way to boost esteem than to be able to say "I did that!".

The good news is that the vast majority of Tourette's tics don't get worse, but instead subside as you progress in to adulthood. I still have tics at 28 years old, however they're relatively mild and consist of mostly hand motions. I don't have any more audible vocal tics, though an annoying but silent nose and throat tic comes along infrequently.

And finally. I know how painful it can be to tic over and over, wanting to stop, but not being able to. It can drive you to physical and mental exhaustion. Over the years however, I've been lucky enough to find that I have a few activities during which I never experience any tics. None whatsoever. The first is while driving fast. The second is listening to music. The third is performing music. And I never tic when I'm in an ADD hyper-focused state of mind. I couldn't tell you why this is, exactly. I do know that there are well regarded theories that the brain uses completely different pathways and systems for processing music. It wouldn't be entirely unreasonable to muse that ADD hyper-focusing bypasses the sensitive receptors that agitate Tourette's Syndrome too. Maybe it isn't even a bypass. Maybe those creative parts of our Tourette brains are just a little bit gentler, or maybe finding that deep creative vein requires those sensitive receptors. I don't know. I do know that I'm not the only person with Tourette's that this applies to. There are countless creative people who experience a temporary relief from tics while they make music or paint, for example. Does your nephew have something like this? If not, maybe it wouldn't hurt to introduce him to a piano and see how it makes him feel.


Thank you so much for writing to me and offering your help. My nephew is very sensitive about talking about his tourettes but if he ever has any questions, I will write to you.

Thanks
Jackers

PS. It's ok to be sensitive sometimes, in my opinion. I'm still a little sensitive about my Tourettes (I totally didn't get a little teary-eyed while I was writing this post. It's just some sand. In both eyes. No, really.), but there isn't any rule that says you have to be tough all the time!

Haven't found anything other than mental relaxation that helps... and cannabis... it really helps too, I might ask to get some prescribed for that.

Blueroo thanks for sharing that with me. I am relieved to hear your tics did not get worse with age. No, my nephew has not found a musical instrument he is interested in. He has tried a few, not the piano though. My mom, who he spends a lot of time with, has a piano and he has never shown any interest in it. He does love to play video games, nintendo and wii, and he doesn't seem to tic as much when he plays those. As a teacher I've never been a big fan of video games but for him it seems to be a good thing.

I hope when I said he was sensitive about his tourettes I didn't sound critical. I didn't mean to anyway. I think he is very brave and handles his illness with a strength I'm sure few could muster. He is my favorite person in the world.

Anyway, thank you again!
Jackers

Haven't found anything other than mental relaxation that helps... and cannabis... it really helps too, I might ask to get some prescribed for that.

Cannabis? Is that really a good idea? He's 10 years old! And, is it even possible to get a prescription for cannabis for treating tics? Am I just being really ignorant here?

Seriously Mincan, were you kidding about the cannabis? I'm pretty sure you can not get a legal script for cannabis in the US anyway. At least I think that's what wiki says. Really, were you kidding?

Thank you Franny,I was worried it was just me who didn't get it.
Jackers

PS. It's ok to be sensitive sometimes, in my opinion. I'm still a little sensitive about my Tourettes (I totally didn't get a little teary-eyed while I was writing this post. It's just some sand. In both eyes. No, really.), but there isn't any rule that says you have to be tough all the time!

Thanks for this post blueroo. I think I got some of that sand in my eyes, too. Jackers, my tics did not get that much better with age but I just try to not let it bother me most days. I think about how much worse off I could be...I could have a horribly disfiguring or debilitating disease...etc., etc., etc. Life really is what you make of the hand you're dealt and everyone has a few jokers in the mix, ya know?