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 Libertine154
Joined: 12/7/2005
Msg: 20
Tourettes syndromePage 2 of 2    (1, 2)
Shaysmom..has your neurologist tried Clonodine for your son? It has halped my sone somewhat. From what I understand the meds only help the symptoms; they dont em=ntirely eliminate them.
I live in Columbus. Ohio and feel I am fortunate to have Childrens Hospital in town inmy corner.I dont know where you are, but you might consider another nearby city's facilities to assist you. This my not be possible of course, but its an idea.:)

And, I use Adderall for my own ADHD. Keep in mind most meds only have maximum efficacy for abt 7 yrs tops. Maybe he might benefit from another medication, should you choose that route. Good luck!
 bluulagoon
Joined: 6/13/2007
Msg: 21
Tourettes syndrome
Posted: 8/26/2007 9:50:09 AM
My nephew has OCD and my sister went through hell for years.After doctors putting him on all kinds of meds and things not getting better ,my sister was forced to put him in the hospital for a year where they could regulate his medication.It is very draining having these conditions in the family.The children usually have problems in school and the other children reject them because they are different.After he came out of the hospital,by this time he was an older teenager, he made a choice for himself and that was to start working out and eating really healthy.Since then, he is off of half of his meds and is in university and doing really well.
 brandy_n_3
Joined: 8/27/2006
Msg: 23
Tourettes syndrome
Posted: 8/26/2007 4:40:06 PM
My kids have not been offical diagnosed with Tourette's but their shrink says they are "tourette-y" meaning they show some signs but not enough for an actual diagnosis. My oldest started having occasional tremors when he was 3, it was enough to concern teh ped who had an MRI done on him. SInce then he has developed a few other "tics" I guess you could call them, one of which is chewing, occasionally the tremors come out. He also has ADHD and anxiety disorder. We looked into clonodine to help witht eh anxiety and his anger but after an EKG showed possible abnormality and we went through an echo (everything came back normal) I learned just how dangerous clonidine is and the potential risks to his heart so opted not to try that one. He is on ritalin for his adhd and I have not noticed any increase in his tics.

My daughter has a blinking tic, she blinks constantly. It started at age 4 and I thought she was having eye troubles so off to the eye dr we wnet. HEr eyes are fine. I learned this was a tic when she was being assessed for her other disorders. SHe has adhd and conduct disorder. So far none of the meds we have tried have worked BUT the supplement melatonin has helped somewhat.

The little one the dr's susspect has ocd but I refuse to allow a diagnosis this young on him. I guess if tourette's is tied to all these and the older 2 have tics already I should be keeping an eye out especially as puberty comes around eh. I do keep them very physically acitiv mainly to combat their adhd but if it helps with tics then all the better.

I do have a question for those of you with tourette's though. WHen it comes to blinking tics etc how do you manage that one? I can undertand using the muscles in other areas that have tics in different ways. Is there anything that can be done to help blinking tics?
 brandy_n_3
Joined: 8/27/2006
Msg: 25
Tourettes syndrome
Posted: 8/26/2007 9:01:28 PM

brandy.. it is obvious by your post that you love and cherish your children - HOWEVER... please take a giant step back and stop giving in to all the 'fad' 'disorders'... your children are likely.. and I say that with caution .. but likely, completely NORMAL... please consider NOT medicating them and.. taking life (g0od or bad) as it comes - teach them to COPE with their differences.. please.. not to mask them .. give them techniques to help them conquer their deficits or differences.. you CANNOT STOP A TIC! Try to stop YOURSELF FROM sneezing ... just once! And maybe you'll relate, (JMO)


I am not giving into fad disorders. It took years before my first was diagnosised incl a hospitalization. If you call a child who tortures animals, jumps of roofs, sets fires, pulls knives on people in addition to lack of attention, hyperactivity etc normal you have been living in very strange conditions. My son is the only one medicated and he NEEDS it to function. With it he can act like a normal child, it helps him focus so I can work with behaviour modification to restructure the way he reacts to things. I do give them the skills to cope with their differences, I work hard everyday to strike a balance between coping witht heir differences and changing certian behaviours all together. I don't expect them to stop a tic, they have them I have never tried to make them stop, but if there is a way that I can teach them to control it like those on here have said they learned to do than I want to do that so that they can lead as normal a life as possible. My son will never be "normal", he is on disability benefits and will need medication for the rest of his life just so he can function on a somewhat even playing feild. Between the work I do with him, the work he does with his therapist and the education I give him now that he is homeschooled he is starting to catch up academically and can focus enough to do so, despite his high IQ his disabilities got in the way), he has friends for the first time, and I have been able to relax considerably since he started getting medicated about the dangerous behaviours because within 2 months of starting meds those behaviours stopped. With his Dr's help and observation we did a 2 week trial without meds last summer, he set my bedroom on fire within days. The meds are needed!

As for my daughter, again not a normal little girl. She is not medicated but I do work with her on changing behaviours, she sees a therapist and is also homeschooled. SHe is an extremely bright child, iq proves that, but combined with adhd and her complete disregard for all authority this makes for an interesting challenge. Ever see a 5 year old tell off a cop, ever see a first grader have detention every day or suspensions not for being a 6 year old but because she routinely told the teacher what she thought of her in no uncertain terms. These are not behaviours that are condoned in my home, she has been disaplined since day 1 for them. She has greatly improved with the work I have done with her and that has happened with her therapist. SHe is not medicated like I said, but I do give her melatonin, otherwise she doesn't sleep more than 3 hours a night. That is not healthy for her. Like her brother she has a tic, again I don't expect to eradicate it but if I can give her tools to help manage/control it I will.

THe little one like I said I refuse to allow a dr to diagnosis something like ocd already. he has signs of it but is otherwise a bright healthy normal little boy and I will not have him labeled so young. If I was just giving into fad disorders I would have jumped on the band wagon with that one, not told his dr to stop labelling him at such a young age.

I know you seem to think that you can see into my home and that my children are picture perfect normal kids and I am just wanting to medicate for no reason but you are sorely wrong. Perhaps you should realize that parents like myself have been through the specialists, the tests, the heartbreak of realizing your child will never be normal and didn't just decide to take the easy way out before you make judgements such as the one you did.
 brandy_n_3
Joined: 8/27/2006
Msg: 27
Tourettes syndrome
Posted: 8/27/2007 8:37:06 AM
First off I was not the OP!, I simply replied to this thread asking for information and you jumped on me claiming that I was falling for fads and to not medicate my children. You are not a dr nor do you know my children or myself to make such proclaimations.
 gingerleeroth
Joined: 4/10/2012
Msg: 29
Tourettes syndrome
Posted: 8/16/2013 7:29:08 AM
I am a single woman 47 years old and my tourrettes has gotten worse over the past 3 yrs. I also have adhd and narcolepsy. this seems to make it hard for dr. to prescribe right meds! I have done the clonidine but doesnt help now moving on to Rispadol and Provigil? I twitch bark like a freakin dog and ooo- so many different things! now I am getting laid off from my job due to cuts and I am scared to death to look for another one! I have a college degree but I am sure no one wants to hire someone with my severe tics. unless of course the circus is coming and they need a trained seal act! that is about what my barks sound like! which are now making me lose my voice. mine also started when younger but they gave me phenobarbital. that helped for awhile but then as I got older I was in abusive relationships which seemed to bring it back out. it is so out of control now I hate it. I get so mad. I am a happy go lucky person but this is bringing me down- fast. I just wish I knew how to face a new job and find a relationship that is giving and understanding. I am always giving and giving I think I feel I need to do that because of this. well just wanted to vent I guess. glad to know there is more of us out there and I can come vent and you all understand as you live it too!
 gingerleeroth
Joined: 4/10/2012
Msg: 30
Tourettes syndrome
Posted: 8/16/2013 7:32:04 AM
amen.
I try to stop the tics all the time - not happening.
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