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My 13 yr. old son was recently diagnosed with Tourettes.

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Unread 02-05-2009, 07:36 PM   #1
djs817
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Confused My 13 yr. old son was recently diagnosed with Tourettes.

I am devastated as my 13 yr. old son was recently diagnosed with Tourettes. He has had tics in the past, but the vocal ones right now are severe. We have to take him for a brain scan on Sunday and I am nervous about the meds which I hear have severe side effects. As far as school goes, his teachers have been wonderful, but we all know there are kids out there who can be cruel...and some who are very understanding. I know that this is something that can be helped and isn't life threatening, but it's causing my husband and I extreme tension and problems in our marriage because it tends to be at its worst in the eves and we can't watch television or do anything w/out hearing him. The tics are taking over everything. Please help...
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Unread 02-05-2009, 07:58 PM   #2
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Hi Deb and welcome

so sorry to hear your son is intense waxing right now. that is so hard, especially when kids are cruel

my son is now 19yo but when he was at school we had a 504 plan in place for him. By law kids with Tourette Syndrome are covered for special accommodations at school

we found being up front about the TS diagnosis and symptoms with teachers and peers was the best way to ensure a better school experience for our son.


here is more info on it from the TSA
http://www.tsa-usa.org/educ_advoc/education_main.htm

I also wanted to encourage you greatly that there are ways to treat tics that dont involve the strong meds with side effects. My son tried meds for a year but the side effects were really worse than the tics. We then started a nutritional program that has really worked for him

I have a thread here discussing what helped him. Hope it will give you some pointers
http://neurotalk.psychcentral.com/thread1145.html
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Unread 02-06-2009, 09:17 PM   #3
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hi djs,

it is like reading about me...I developed my severe vocal tics around that age...

I kept everyone up with my loud vocal tics...my parents owned a mom and pop's shop and worked 12 hour days and couldn't sleep at night because of my vocal tics...

I was finally officially dx at 14 but still, my parents still had a hard time "accepting" that I have this disorder...

like Cheri suggested, by law, your child should have special accommodations at school.

What I think you should do is first of all, talk with your son about everything, ask him how he feels, if he feels the tics affects him to the point that it bothers him because it bothers others...different kids have different issues already beside tics and tics just add FUN to the mix...

he may feel like he doesn't want "SPECIAL" treatment...if so, maybe respect his wish and then tell him that if at any time he feels uncomfortable, that there are other plans that he can pursue so he'll feel better to have a back up plan...

as for your home life, the first thing I would suggest for both of you is to get over the shock...then get over the guilt...then get over the denial...

because any of those factors will keep the communications closed up between you and your son...

practice body languages that avoids:

"not my kid"
rolling eyes
pity looks
"this is killing me"

turn all that into positive energies, encourage him to do anything that he sets his heart and desires to...

tell him that there are sport stars with TS, actors with TS, Mozart had TS...

you and your hubby should probably look into counseling for yourselves to "ACCEPT" that he has TS...

it is one thing to KNOW that he has TS vs ACCEPTING that he has TS...

I think a good counselor is going to tell you to take away your guilt and stop saying to yourselves: "I gave this to him"

yes, you might have given him TS, but you've also gave him many other things...look into all the positive gifts that is your son...

as for his noise...don't ignore him or stop watching TV....don't let him feel like he's making you NOT able to watch TV...keep it on even though you feel like you can't watch it. Tape the shows for other times.

Try to workout schedules around him that will satisfy everyone...no, it won't be perfect but everyone will have to compromise, including the kid with TS...don't give him special treatments for that will make him feel worse about himself...

not preaching you...just from one TSer that did some soul searching after many years of struggles...

best of wishes and I hope you keep on talking to us..



Quote:
Originally Posted by djs817 View Post
I am devastated as my 13 yr. old son was recently diagnosed with Tourettes. He has had tics in the past, but the vocal ones right now are severe. We have to take him for a brain scan on Sunday and I am nervous about the meds which I hear have severe side effects. As far as school goes, his teachers have been wonderful, but we all know there are kids out there who can be cruel...and some who are very understanding. I know that this is something that can be helped and isn't life threatening, but it's causing my husband and I extreme tension and problems in our marriage because it tends to be at its worst in the eves and we can't watch television or do anything w/out hearing him. The tics are taking over everything. Please help...
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Unread 02-08-2009, 03:26 PM   #4
Laraliz
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Default Making informed TS decisions

Hang in there. My son is 8 and I am aware of the roller coaster of emotions that go on. During the bad days and weeks, I try to keep my son busy. Getting outside can sometimes make it easier on him b/c it is a distraction. Try hiking, playing sports, relaxing activities... Nothing makes it much better in my opinion, but some doctors and people with TS report that some activities that require enough concentration can create period of time where the tics don't occur. Like playing an instrument. My son has taken up guitar this past year b/c he was interested and b/c I read about this. Worth a try!

I've also read that tv and video games can make it worse for some.

*-*

All I can suggest in regard to your husband is to sit down with him alone and talk through it. This is what helped us. We cried and talked and mourned. We came up with a general plan that we know can change along the way. Our motto is to "Take it one day at a time", in order to not miss out on the relatively good days. We still have tearful nights, but we have eachother and can't do it alone.

I talk about my ideas, experiences, and findings in dealing with this *-*
share what does and doesn't work for you, so we can better make informed decisions for our children.

Good luck!

LaraLiz



Quote:
Originally Posted by djs817 View Post
I am devastated as my 13 yr. old son was recently diagnosed with Tourettes. He has had tics in the past, but the vocal ones right now are severe. We have to take him for a brain scan on Sunday and I am nervous about the meds which I hear have severe side effects. As far as school goes, his teachers have been wonderful, but we all know there are kids out there who can be cruel...and some who are very understanding. I know that this is something that can be helped and isn't life threatening, but it's causing my husband and I extreme tension and problems in our marriage because it tends to be at its worst in the eves and we can't watch television or do anything w/out hearing him. The tics are taking over everything. Please help...
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Unread 02-23-2009, 09:08 AM   #5
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Quote:
Originally Posted by djs817 View Post
I am devastated as my 13 yr. old son was recently diagnosed with Tourettes. He has had tics in the past, but the vocal ones right now are severe. We have to take him for a brain scan on Sunday and I am nervous about the meds which I hear have severe side effects. As far as school goes, his teachers have been wonderful, but we all know there are kids out there who can be cruel...and some who are very understanding. I know that this is something that can be helped and isn't life threatening, but it's causing my husband and I extreme tension and problems in our marriage because it tends to be at its worst in the eves and we can't watch television or do anything w/out hearing him. The tics are taking over everything. Please help...
you'll work though this initial period. there is a bright future. i'm a 53 year old ts'er who wasn't expected to finish elementary school. looking and working toward that bright future is the key. i joined the navy upon finishing high school and somehow managed to cope with the add and ocd that usually accompanies ts. i found out i excel with words, finished college and grad school and now work in the middle east as a journalist. your son will find his gift and focus on that. in the meantime, you have to be positive.
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Unread 04-26-2009, 05:20 AM   #6
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Quote:
Originally Posted by Bama1 View Post
you'll work though this initial period. there is a bright future. i'm a 53 year old ts'er who wasn't expected to finish elementary school. looking and working toward that bright future is the key. i joined the navy upon finishing high school and somehow managed to cope with the add and ocd that usually accompanies ts. i found out i excel with words, finished college and grad school and now work in the middle east as a journalist. your son will find his gift and focus on that. in the meantime, you have to be positive.
How did you get through school? I am asking because my 10 year old will be going back to school next year. We homeschooled him this year and because of his defiance, ocd, mood swings, etc, we were not able to accomplish much of anything . He'll be repeating 4th grade, which we all, including his sensory therapist, believe is the best thing. He's not ready for 5th grade for many reasons.

I hope I'm not being to forward in asking these questions. How did you manage the mood swings and behavioral issues that come with TS and OCD? As a parent, I try to keep things as normal as possible, while accommodating his needs. It seems that the behavioral issues are the least talked about. His tics are the least of his problems, especially according to him. He is a rager and we've had the police here and have taken his to the hospital because they get very severe.

I guess I'm looking for some insight from someone who's lived though it. The perspective of the person who has these syndromes to help me understand what it's like from my son's perspective. He can't really vocalize how he feels but he is starting to recognize some of it and will sometimes talk about it.

Please help me understand.
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Unread 04-27-2009, 08:58 AM   #7
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Hi Brink

have you tried Cognitive Behavioral Therapy (CBT) for your son?
It really helped mine with his OCD and mood issues

we tried meds for a year with disastrous side effects. The combination of CBT, careful diet free of chemical food additives, and also corrective supplements as well as acupuncture really turned his life around!
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Unread 04-27-2009, 06:17 PM   #8
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Quote:
Originally Posted by Chemar View Post
Hi Brink

have you tried Cognitive Behavioral Therapy (CBT) for your son?
It really helped mine with his OCD and mood issues

we tried meds for a year with disastrous side effects. The combination of CBT, careful diet free of chemical food additives, and also corrective supplements as well as acupuncture really turned his life around!
WE're trying to get into that. We had a therapist but that one didn't work out. She just kept promising to teach him relaxation techniques and never 'got around to it' during session. What a waste of money she was!

We're trying a new center and have an appointment for intake on May 6. I'm just hoping and praying that this one will be the right one.

Meanwhile, we bought a trampoline and he's been so much happier. It has to do with his sensory issues. We found out that he has some pretty tough sensory issues and that life in general is just difficult for him.

I really appreciate all your help Chemar! You've been great about responding to all my posts!
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Unread 05-01-2009, 01:24 AM   #9
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Quote:
How did you manage the mood swings and behavioral issues that come with TS and OCD? As a parent, I try to keep things as normal as possible, while accommodating his needs. It seems that the behavioral issues are the least talked about. His tics are the least of his problems, especially according to him. He is a rager and we've had the police here and have taken his to the hospital because they get very severe.
I'm not online very often unfortunately, but just wanted to say that mood swings and behavioural problems including the anger episodes are more common in children who have other conditions as well as tics, and as far as I remember from all the research, the more conditions one has, then the more the likelihood of those sorts of issues. I'd look elsewhere, especially if his tics are not of too much concern to him. e.g. you mention sensory issues in one of your other posts. You also mention the OCD and Chemar has given you advice there about the CBT. Worth investigating.

My son who was diagnosed many years ago (but he is also on Autism spectrum) had a LOT of sensory issues and it helped to get on top of the triggers. Certain things would totally trigger him. Some were more subtle. That combined with everything else would actually become overwhelming for him... thus the meltdowns.

BTW it's common for the meltdowns to happen at home. It's where the child feels safe. My son (when still in school) would spend his whole day suppressing his tics, be overloaded with sensory stimuli and then by the time he got to the car in the afternoon after school he was absolutely exhausted. I see you're home-schooling, so maybe some home-schooling sites would have more advice than I can give about that, but there must be some tricks to try regarding setting out the work for the day in small blocks of time, rather than lengthy periods etc.. You may have already tried those types of things, but if not, it might be worth a try.

Also worth remembering that some compulsions might be unseen. My son used to spend hours counting signposts on the side of the road when driving. He used to actually be triggered by bright sunlight too when driving. This of course is not part of TS but is related to his sensory issues.

I'd love to hear more about his sensory issues, brink.
What's happening with that?

I know you've seen this site already (from your previous post) but will post a couple of specific pages.

http://www.tourettesyndrome.net/sensory_overview.htm
Overview of Sensory Integration

http://www.tourettesyndrome.net/sensory_overview2.htm
Overview of Sensory Integration - Page 2

___________

http://www.tourettesyndrome.net/behavior_hone.htm
Behavior

http://www.tourettesyndrome.net/Files/Carta2004.pdf
Seven Successful Strategies for Preventing Challenging Behavior in Young Children
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Unread 08-10-2009, 12:03 PM   #10
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Please consider EEG neurofeedback therapy. Read the research out there about its effectiveness. A tic disorder is a brainwave disorder, and brainwaves can be trained out of bad rhythms.

There are lists of skilled and well trained NFB practitioners on the ISNR website. You would need to get a full assessment first to determine exactly which is the problem brainwave (I'll tell you right now: it's the SMR or sensorimotor rhythms). The treatment is computer games that you have to play with that brainwave via electrodes.

My son is 13 and was diagnosed with Asperger syndrome and a severe tic disorder a few years ago. He is competely tic free now, happy, healthy, med-free, doing well in school, and has enough friends. He's still quirky and unusual, but he always will be.

Do at least consider this option. And don't be scared off by the cost. Talk to the practitioner to find out what your options are. Unfortunately, all neurofeedback is private right now because there is nobody to pay for the big gold-standard study that you need in order to get public recognition.
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