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Thread: AmyS

  1. #1
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    Unhappy AmyS

    My son is 14years old and has been diagnosed with Tourettes since the age of 7 his tics have always been motor tics and some sound tics but not any of the vocal tics but within the last two years he has started to have episodes that look just like Dystonia and they seem to be getting more frequent in their occurances.

    We have had MRI's done as well as bloodwork all has come back normal he will be of age for his drivers license soon and he is very active He is on the Varsity Cross Country team and went to State and ended 16th out of 180 kids he also is on the wrestling team and he runs track a 4:52 1600m so he has so much he loves to do and is an amazing athlete.

    We live in the US but I have seen so many different Neurologists and they all just want to throw some medications at him and they think it's all related to stress... this kid has a great life and has no more stress than any other teen his age and he said he feels pretty good about things?!!!

    I just feel as a mother that I am letting him down He takes 1mg of Diazapam as needed for the "Episodes" and it usually just makes him tired and the body contractions stop but these episodes look just like the disease dystonia?? then we ended up in the Emergency room because the Diazapam was not working and they proceeded to give him Benedryl 25mg then that didn't help then went on to give him 5mg of Ketamine then another 5mg of Ketamine and finally the contractions stopped!! that is ALOT of medications!!! any help would be much appreciated

    Thanks!
    Last edited by Steve; November 9, 2016 at 02:57 PM. Reason: re-format for easier reading

  2. #2
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    Default Re: AmyS

    Welcome to the Forum, Amy and thanks for joining us.

    I have seen so many different Neurologists and they all just want to throw some medications at him and they think it's all related to stress...
    The premise has merit, but perhaps there could be another treatment option you may want to consider investigating.

    Tourette tics, while involuntary are influenced by both internal and external environmental factors. Internal factors would include stress, anxiety, fatigue and excitement while external factors are people, places or situations that exacerbate and maintain tics in a predictable way. The environment does not cause tics, because tics are involuntary, but the environment influences tics.

    In recent years research has been done on behavioral therapy as an option to help manage tic symptoms. This form of therapy is referred to as Comprehensive Behavior Intervention for Tics (CBIT). It is a comprehensive approach that addresses the environmental factors that exacerbate tics, and finds strategies to mitigate those factors.

    CBIT also incorporates relaxation techniques along with techniques used in Habit Reversal Therapy (HRT) adapted to Tourette tics by using competing responses.

    The rationale uses the ability of the brain plasticity to strengthen circuits in the brain between the voluntary and involuntary parts of the brain.

    CBIT is not a cure for Tourette and does not eradicate tics, but provides a means to manage tics.

    Our Forum has extensive information on CBIT HERE.

    You can also learn about CBIT on the website of the Tourette Association of America HERE

    Have you been in contact with TAA to inquire about Tourette specialists in your area? TAA also maintains a list of CBIT practitioners across the Country.

    Perhaps an assessment of a combination of medication along with behavioral interventions might be an approach to investigate.

  3. #3
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    Default Re: AmyS

    Quote Originally Posted by AmyS View Post
    My son is 14years old and has been diagnosed with Tourettes since the age of 7 his tics have always been motor tics and some sound tics but not any of the vocal tics
    We have had MRI's done as well as bloodwork all has come back normal he will be of age for his drivers license soon and he is very active He is on the Varsity Cross Country team and went to State and ended 16th out of 180 kids he also is on the wrestling team and he runs track a 4:52 1600m so he has so much he loves to do and is an amazing athlete.

    We live in the US but I have seen so many different Neurologists and they all just want to throw some medications at him and they think it's all related to stress... this kid has a great life and has no more stress than any other teen his age and he said he feels pretty good about things?!!!
    Hi Amy and also welcome to the forum,
    Steve's our resident encyclopedia/librarian.
    His help and guidance are usually spot on and invaluable.

    Personally, having TS+, I know that we don't think like the average person, actually we often think way off the wall. So I'll comment on my observations from this side of the TS wall...

    Here's where I throw a wrench into the works (not out of malice but simply to encourage better observation and understanding)
    With identical stress factors, 2 individuals can and almost definitely will react in totally different ways. Compare it if you will to the fight or flight reaction: same crisis, 2 people, one runs, one fights. (yes sometimes both run or fight) but I'm sure you get my point.

    You state he has no more stress than any other teenager. I would encourage you to reevaluate that view. He's 14 years old, is going though puberty, he has Tourette's which rarely occurs alone and even if it was alone the tics can create a lot of stress on their own, especially at that age depending on how others react to his tics and mostly how he feels about them. He's a good and really active kid.... meaning there is a BIG possibility he could downplay how he's truly feeling because he wouldn't want you to worry even more about him. Also, if he's extremely competitive his desire to win can also add to his daily stress.

    It's not how much stress he has in his life. It's how stress affects his life and how he reacts to it that is important.

    I just feel as a mother that I am letting him down
    Now you really got me mad (just kidding) You're his mom, he's got issues you can't fix. That's not easy. Unfortunately it's a hard cold fact of life and I encourage you to get that thought out of your head as fast as possible! Mainly because it hurt's you and he will undoubtedly detect it and that could potentially add extra stress if he feels it's his fault. Accept that he's different than the average teenager but don't treat him differently. First sign that you are not letting him down is that you actually have this feeling. It's a normal reaction triggered by compassion when we can't fix something that's ailing someone we love. Meaning that if you feel this way it means you are not letting him down.

    Personally, when I was growing up in the 60's and 70's when my undiagnosed TS was spitting and scratching places I won't mention constantly and systematically my mother would mock me and laugh about it and talk to others about my "rituals"... heaven forbid she would have talked to a doctor about any of it though. When my undiagnosed ADHD, OCD and ODD etc... came into play (in other words when I got into trouble.... quite often as a matter of fact) I'd get the paternal old school whooping. We could say they let me down as parents... we could say they were simply uneducated people that didn't know how to raise and love kids... or we could simply say that that's how things were when I was growing up. But that was then and this is now.

    Now, if you acted like my mom did with your son in our current day and time... Then Yes, I would say you were letting him down. Medication can be very helpful in some cases so try and keep an open mind.

    As for the important technical information and resources well that's Steve's area of expertise

    Warmest Regards,
    Gary

  4. #4
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    Default Re: AmyS

    Amy well done! Communicating and reaching out to others is the first of so many important steps. Much like Gary (I'm a child of the 70's and 80's) I was undiagnosed until 18-ish. I truly believe there is a place for medication if that is what your "team" feels is best. But like all things medication regimens should only be a part of a complete system. Much like your son I had an active teen life with my TS+ in tow and not to dissuade your confidence, there are other, lets call them sub-surface realities, that should be monitored. But don't give up as Gary/Steve suggest, you are doing well! The activity is outstanding, I personally played ice hockey, soccer, rugby, ritually cycled everywhere I could and that frustrating of all sports golf, arggghhhh golf!

    Now as the boys mentioned every person is different when it comes to their TS. So these are just my beliefs from, you guessed it my personal experience with TS. Let me address the complete system if I may. That includes; medical regimen, exercise, nutrition, writing, whole-listic approaches.

    1) Meds; I never personally subscribed to a medical regimen, primarily due to no diagnosis during years where a young body and young mind would have benefitted from or required outside controls to mitigate and level certain outcomes. To me they are bandaids nothing more. There can be a place for medication, but if our generation made it through without diagnosis in many cases and drug free then others can hope. But remember its not so much the choice of medication or none, but finding a long term stable professional to build a relationship with who understands that meds can and should be part of something greater. In my opinion.

    2) Exercise;
    The activity and sports worked for what I presume are obvious reasons, the physical and psychological release and calmness that all activity brings to the spirit. Of equal importance, and please don't take this wrong, my time with friends for fun and sport, meant freedom from those closest to me, it was in many ways, my quiet time, my alone time, my time of peace of mind. Now look I know parents love, parents care, parents naturally want to fix and/or support. But there were so many times where my greatest release was to get away from those closest to me, it was a break from it all. Later in life, once I started into the workforce, i subbed in work in lieu of sports.

    Just the other day while I was conducting public speaking for my local Tourette chapter parent group we discussed how one family's older teen was doing every possible hour at work and they were worried about his global health due to the harsh schedule. This is where Gary's point applies most, they were watching and noticed he was being overworked, which might have led to his TS going into the red zone so to speak. Much like sport to get away from mom and dad for me, work overload allowed that teen to ignore his TS and its requirements for good mental and physical health. Never stop assessing the triggers and limits the sport load is awesome, so is getting a drivers license, just don't be afraid to engage in conversation about the reasons behind all the activity.

    3) Nutrition; and let me clear I speak of nutrition for body, mind and soul. Sport takes care of mind and soul for sure, but remember the ultimate tool in your sons kit is healthy unprocessed foods. Basically avoiding the inside aisles of the grocery store (hey I enjoy cheap meals or even cheat days like everyone, I just realize there are consequences for the "activity" level of my TS and primarily certain conditions such as my OCD, bi-polar, etc. when I cheat) is critical. No doctor will ever say, "Hey Amy, please stop ensuring your son (and family) are eating with long term health in mind, that is really messing up our medication regimen." Quick example, when I use to eat poorly the range of my manic vs. depression levels was out of whack, it was hard for me to function in many ways without ostrisizing friends, family, co-workers. With healthy eating, I can see both ends of this spectrum dead ahead and regardless of when or if I go manic or depressed they are very tolerable and controllable. Basically with all these in play, I am calmer and happier. Secretly it also makes identifying aspects of my TS far easier.

    4) Writing; This might not seem to have a place with the other elements, but trust me a journal, a diary, or whatever cool word it takes to get him writing will be one of the greatest releases you can do. Perhaps a blog? My website blog was a godsend to me.

    5) Whole-listic; Ya I spell it that way on purpose, it reminds to ensure my life is complete whenever possible. Im not a crystals and candle type of fellow, just being honest with myself that even though I can accomplish anything I want, I need to ensure my life has certain steps that others don't because I have things others do not, all good! So, acupuncture. When I was 21 I tried traditional Chinese version and it literally took my TS away completely. After a 30 minute session my motor tics were gone ( i did not have a pronounced vocal at this time), my bi-polar and depression slipped to the side of the road as well. Now understand that this application might not work for everyone but has always helped me in the past. Also I feel that practices such as acupuncture are similar to medication in that they are bandaids, temporary if you will. Stop them long enough and ...... you get the picture. But it might be looking into. For me what has had the greatest long term benefit since it is part of a lifestyle choice which was not something I was willing to embrace as a teen has been YOGA. I only focus on YOGA stretching as opposed to Asanas but the concept is the same, what a revelation. Now it does not remove or cease my motor and vocal tics, nor does it suppress the neurological aspects of TS, but what it does do is slow my experience down and make things far easier to manage ( at 43 it does help with the damaged caused from 35 years of an aggressive head and shoulder tic).

    Wow I have rambled on for a spell. Either way a complete system is critical or so I believe. The tool box needs not only tools and concepts but also defined models for success. Final thought, ask your son, if he is like most of us with TS, he has a better handle on what is going on with his body and mind than you might realize.

  5. #5
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    Aug 2016
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    Default Re: AmyS

    I hope everything is still going well for your son.

  6. #6
    Join Date
    Aug 2013
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    upstate NY
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    Default Re: AmyS

    Welcome to the forum. I have a 13yo son with TS, ADHD, anxiety and OCD. He enjoys sports, especially soccer (goaltending). Tim Howard (famous goalie with TS and OCD) is his hero.

    There is a great video of a Tourette Youth Ambassador who talks about his experience as a teen with Tourette Syndrome, and his participation in Track and Field comes up in the Q&A part. Maybe you and your son would enjoy watching it: Tourette Youth Ambassador Speech 5 11 11 - YouTube

    It sounds like you're having a rough time finding a good combination of medications. We have found that very tricky too. I live in a small town in upstate New York and there isn't anyone here who really knows what they're doing with meds for TS. We've tried driving several hours to consult a child neurologist, but that wasn't very helpful either. To tell you the truth, the best guidance I've gotten for the meds was at Tourette family retreats or conferences! That has involved traveling, sometimes out of state, but for us, it was worth it. My son now has a med plan that works pretty well for him.

    My impression is that, at least in the Northeast of the U.S., the medical professionals who know the most about meds for TS are psychiatrists who are closely associated with a neurology department that specializes in TS or movement disorders.

    Having experienced several trips to the E.R. with my son, I know that a trip to the ER is sometimes necessary! Unfortunately, going to the E.R. can in itself be very stressful for the child and the parent, and the solutions offered are not always coming from extensive experience treating TS.

    Please feel free to discuss meds tried, side effects, etc., here if you wish. No one here can give medical advice, of course, but if someone here has experience with a specific medication your son has been prescribed, it may at least be helpful for you to hear what others' personal experiences with that med has been.

    Also, I have sometimes found it helpful to discuss a particular medication with a knowledgeable pharmacist on the phone.

    There are many medications that can be considered for TS. Please don't feel that it's Diazepam or nothing. There are lots of options, e.g.
    - continue with Diazepam alone;
    - try adding one or more other medications -- note that there are a number of meds frequently given for TS which have little or no side effects for most patients;
    - try a different member of the Benzodiazepines family;
    - try a smaller dose of a Benzodiazepine, at regular intervals instead of taking it on an as-needed basis.

    We don't have any specific experience with Diazepam or Ketamine ourselves, but maybe someone else on the forum does.

    I don't mean to give too much weight to pharmacological approaches. There are other things one can to to treat and cope with tics, of course!

    Speaking of which, I'm so glad to hear your son is active in sports. Many people find that helpful in and of itself. And it is such a boost for a young person to be involved in something he likes and is good at.

    I understand what you wrote about your feelings about your role as a parent. I can relate!

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