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  • Botox

    Has anyone used botox for vocal tics. If so, how helpful was it. :?:

  • #2
    Botox

    To date we have not received a first hand report about someone's experience with Botox therapy.

    Here's a news report:

    Researchers at Baylor College of Medicine in Houston are using botulinum toxin type A (Botox) to treat the neurological disorder, which can cause involuntary motor and vocal tics. Joseph Jankovic, MD, professor of neurology and director of the Parkinson's Disease Center and Movement Disorders Clinic at BCM, was the lead author of a recent article in the journal Clinical Pharmacology, which showed that Botox can suppress tics in disorders like Tourette's.

    "While we have an enormous amount of data showing that Botox is an extremely safe and effective treatment for a variety of therapeutic and cosmetic uses, the important thing for patients is whether this translates into meaningful improvements in their daily lives," Jankovic said. "Our review makes clear that treatment with Botox accomplishes this across a wide range of chronic and debilitating disorders and conditions."

    Although public awareness about Tourette's has generally improved since medieval times -- when it was thought to be demonic possession -- the disorder remains largely elusive to researchers and greatly misunderstood by the masses.

    "We still don't know exactly what causes Tourette's syndrome, but we do know that it is a genetic disorder," Jankovic said.

    Unlike most genetic disorders, Tourette's is caused by bilineal transmission, a rare event in which both parents contribute defective genes to their child. Nevertheless, the rate of Tourette's syndrome remains relatively stable -- roughly 3 percent of the population carries some form of the disorder, according to Jankovic.

    "We have made tremendous progress with treatments, and even though we don't know the cause of the disease, we are able to significantly improve the quality of life for patients with Tourette's syndrome by a variety of medications," he said.

    A common misperception of Tourette's is that coprolalia, the involuntary utterance of obscenities, is the predominant symptom, when actually less than half of all patients exhibit it. Furthermore, most people with Tourette's develop other behavioral problems such as attention deficit disorder and obsessive compulsive disorder.

    In addition to Botox, medications like fluphenazine, pimozide and risperidol, which block dopamine receptors, suppress involuntary movements. Jankovic is also conducting studies with other drugs including tetrabenazine, an investigational drug that depletes dopamine, and topiramate, an anti-epileptic drug. Finally, new surgical procedures developed at BCM and The Methodist Hospital hold promise for curbing uncontrollable tics and other neurological problems associated with Tourette's.

    "Tourette's clearly deserves more attention than it has been paid by either the scientific community or the funding agencies," Jankovic said. "For every patient we diagnose in our clinic, there are probably dozens who suffer the consequences of Tourette's syndrome without knowing that they have it."

    Source: Baylor Medical College, Houston, Texas
    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Homepage
    If you enjoy the TC Forum, please consider a Tourette Canada membership
    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

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    • #3
      Botox

      In my opinion (not a Doc) Botox can not impact most typical vocal tics.

      1. Using Botox on "vocal" tics that involve the diaphragm (e.g.: sniffling) scares me. How can you freeze the diaphragm without doing other damage? Breathing is kind of important - tics or no.

      2. Using Botox on "verbal" tics that involve language is the "wrong tool for the wrong job". Coprolalia is not a tic. It is an OCD symptom. Botox can not change nerve signals to the Wernicke (language) and Broca (speech) processing centers in your brain. At least I hope not. Ha ha.

      Now I have to admit that the range of possible 'vocal' tics is nigh-infinite, so this might only cover 80% of them. I use my "80% Rule" here on purpose - the exact percentage is not important. I am open to the idea that Botox could stop certain kinds of muscle movements that create vocal or nasal tics. But would that turn off the impulse that includes the diaphragm? Sniffling is not just a nose twitch. Coughing is not, either.

      Personally, no one will ever get within 20 miles of me with a Botox injection. If tics are damaging my body over time, I can only imagine what turning off the whole system for a short time will do to whatever is actually causing the tics. (Smells like nicotine and Haldol to me.) No one has ever suggested, that I am aware of, that tics are the primary symptom. Tics are the body's reaction to something else. I am sure of it. I get a visceral response from the Botox idea - like having a Latin teacher who yelled at me when I twitched. Oh, I sat still in his class, but I paid for it later.
      Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
      http://www.facebook.com/tourettetiger

      Comment


      • #4
        Botox

        Botox is injected into muscle tissue and causes a localized reduction in muscle activity.

        Botox indeed can be effective, but only in specific cases according to Dr. C.J. Malanga, professor of neurology in the school of medicine at Uiversity of North Carolina.

        ?Some kids have tics that are so violent, so strong and so repetitive, they can actually do themselves an injury,? he said. ?If it?s one tic in one part of the body, Botox is a very effective treatment.?

        source: Daily Tarheel
        Steve

        Dum spiro spero....While I breathe, I hope

        Tourette Canada Homepage
        If you enjoy the TC Forum, please consider a Tourette Canada membership
        Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

        Comment


        • #5
          Botox

          I saw a medical tv show on TS a while back and a doctor over in europe is using botx to treat TS but he said it was sort of a dangerous procedure to due. But the man recieving it said his vocal tics were more calm.
          The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

          Comment


          • #6
            Botox

            Adam this sounds like a false-positive. My first ADHD drug was an antidepressant. A month later, I had the worst depression of my life. The drug was working, and for the first time in my life, I saw the world around me, and it was depressing.

            I would hope that we can now all agree that anxiety makes tics worse. And therefore, less anxiety can reduce tic symptoms. So maybe, this guy's tics got better because he was less stressed because he was being treated for his tics. So maybe the vocal tics got better indirectly.

            Just my first thought.
            Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
            http://www.facebook.com/tourettetiger

            Comment


            • #7
              Botox

              Hello,

              My son is 14 and he just underwent our 2nd round of botox injections for vocal tics. In our case, it has been successful.

              Comment


              • #8
                Botox

                Welcome sbowen!

                Thanks for sharing your experience. Would you elaborate on the rationale that led your son to treatment with Botox.

                Did your son experience any adverse reactions with this treatment?

                Looking forward to your continued participation in the Forum. Glad you've joined us.
                Steve

                Dum spiro spero....While I breathe, I hope

                Tourette Canada Homepage
                If you enjoy the TC Forum, please consider a Tourette Canada membership
                Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                Comment


                • #9
                  Botox

                  sbowen, don't let the Tiger claw at you. I don't mean nuffin' by it. :-)

                  However, if you don't mind, could you describe the vocal tics that were treated by the Botox. I am curious as to the details (see my earlier posting in this thread for some of the motivation).

                  Thanks in advance!

                  ps: hey, if it works, and it don't do permanent damage, then I'll give it a fair shake
                  Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
                  http://www.facebook.com/tourettetiger

                  Comment


                  • #10
                    Botox

                    FWIW there was a report on Discovery Health the other night about Botox being successful in the treatment of Cervical Dystonia.

                    Dystonia is a neurological movement disorder that causes stiffening of certain muscle groups and is believed to have its origins in the same part of the brain where other movement disorder have their origin, such as Tourette.

                    Dystonia: Involuntary movements and prolonged muscle contraction, resulting in twisting body motions, tremor, and abnormal posture. These movements may involve the entire body, or only an isolated area.

                    Symptoms may even be "task specific," such as writer's cramp. Dystonia can be inherited, occur sporadically without any genetic pattern, or be associated with medications or diseases (for example, a specific form of lung cancer).

                    The gene responsible for at least one form of dystonia has recently been identified. Some types of dystonia respond to dopamine, or can be controlled with sedative-type medications, or surgery.

                    The apparent success of Botox in treating Dystonia does not imply effectiveness in treating Tourette necessarily, but is interesting, nevertheless.
                    Steve

                    Dum spiro spero....While I breathe, I hope

                    Tourette Canada Homepage
                    If you enjoy the TC Forum, please consider a Tourette Canada membership
                    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                    Comment


                    • #11
                      Botox

                      Dystonia is also a possible side affect of Tourette's syndrome. I have had several bouts of dystonia over the years. Essentially, parts of my body behave as if they have given up or admitted defeat. The most common example is that after long periods of high stress, both of my arms would contract up to my chest, like the stance of a praying mantis. They would just stay there for an hour or so, maybe less some times, and then it would pass, and I would not see it again for months possibly.

                      I am certain that neurologists separate out dystonic affect from dystonia as a disease, so please forgive any technical errors in that paragraph. However, I am also certain that the episode I describe above is NOT tics.
                      Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
                      http://www.facebook.com/tourettetiger

                      Comment


                      • #12
                        Botox

                        Thanks for that additional information, Darin!
                        Steve

                        Dum spiro spero....While I breathe, I hope

                        Tourette Canada Homepage
                        If you enjoy the TC Forum, please consider a Tourette Canada membership
                        Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                        Comment


                        • #13
                          Reply to Botox Questions

                          I am sorry that it took so long for me to respond to the questions that my post raised.

                          First, let me correct myself. My son has had Botox injections three times. Once in the upper back and neck, twice in the vocal cords, once in the facial muscles around the eyes, nose and mouth (the facial muscles were done the same time as the last vocal treatment).

                          My son was on haldol. We absolutely hated that medication but it was the only way he has been able to function somewhat normally in the past few years. Finally, even the haldol wasn't enough. His vocal tics escalated to the point that he could not attend school and would not leave the house. The main vocal tics were grunting, clearing the throat and screaming. He literally screamed at the top of his lungs every minute or two for three weeks. The only relief came during sleep.

                          The first neuro we saw wanted to try the botox in the head and neck first to see how my child responded. While his head and neck tics did not bother him as much as the vocals, they were still an issue. My son has severe OCD and one of his worse fears is shots. However, he agreed to give this a try. He received nine injections. The only ones that were really bad were the ones closer to the neck. They made him disoriented and dizzy for just a few minutes. We became very excited when this was successful. The doctor used the lowest dose possible and we still saw great results. We had no head shaking for around three months.

                          While I liked this doctor, I sensed that he was somewhat uncomfortable doing the vocal tics. Of course, this made me feel very uneasy. I began to do some more research and finally found an otolaryingologist (sp?) who has had one patient with TS. Even though he is three hours away from us, we decided to give it a try. This was one of the best decisions we have ever made. This doctor is absolutely FANTASTIC!

                          We arrived for a consult on a Thursday. He had already called and spoken with me so he knew that my son wanted this done but was terrified of the procedure. After the inital exam he explained how the injections would be done and as he saw my son become agitated he offered to put him to sleep. My son accepted the offer and we were scheduled to have the procedure done the next day.

                          This was a very fast procedure and done in the hospital. My son was under anesthia for about 5 minutes. Within a couple of days, the screaming tics, as well as the grunting were completly gone. My son was hoarse for around three weeks, but he has said they the trade off is worth it. Once again, the lowest dose possible of botox was used. It lasted for about 2 months.

                          We went back for a second treatment (and a higher dose of botox in the hopes of it lasting longer) and, at my sons request, discussed the possiblity of botox helping his eye blinking and facial grimicing. The doctor agreed to give it a try. We came home after the procedure and removed my son from haldol, hoping that the botox can be used instead (the haldo removal is a story in and of itself, it was horrible!!!!) Once again, the procedure was successful for screaming tics and throat clearing. Eye blinking and facial grimicing have been greatly reduced.
                          Since coming off of the haldol, however, my sons headshaking is very severe. The docot is discussing the case with a neuro that he knows and he hopes that she will agree to do the back and neck at the same time that he does the next botox treatment.

                          Here are the facts as I see them about botox: pros, cons and general comments.


                          1. Botox in the vocal cords causes hoarseness
                          2. Botox around the mouth has caused my son to not be able to smile correctly. He has said that he would like to see if a lower dose could be used on the facial muscles.
                          3. My son seems to have a day or two where the urge to tic is there, but he cannot. This is very frustrting for him. However, it does go away. It is almost like his brain realizes that it is not getting the satisfaction and just stops trying. Once agian, my son says that a couple of days like this is worth the overall benefit.
                          4. Far less side effects than Haldol and other medications. My child is actually awake!!
                          5. It wears off (both a pro and con). While we are learning about this, it is not that scary because, as in the case with not being able to smile correctly, we know that it is only temporary.
                          6. You can get different results each time you use the botox. Sometimes it may last two months, sometimes six months. Sometimes it may relieve all tics, sometimes it may relieve 80% of the tics. It is unpredictable.

                          Please note that I am not pushing Botox on anyone. I simply wanted to share our experience. We chose this path after monhts of research and only when we felt that we had no other options. Many years ago, when we first read about this as a possible treatment, I remember my husband saying "NEVER". I understand the reservations that many people have. For us, this seems to be the right course of treatment. I respect the opinions of those who think this is too radical or dangerous. I only ask that you respect my opinions as well and don't blast me for seeking this treatment for my child.

                          Merry Christmas and/or Happy holidays!!
                          Susan Bowen

                          Comment


                          • #14
                            Botox

                            Susan:

                            Good to see you on the forum again and thank you for detailing your experiences.

                            As a mother I can understand that any option has to be considered to provide some relief for your son.

                            It sounds like you have some good Doctors working with you on this and they are being very careful to protect the wellness of your son.

                            Now that life has improved for your son has he been able to return to school?

                            The main thing is that he feels better about himself and his TS.

                            Thank you for sharing your story and please keep us posted on your progress. I hope you have a wonderful holiday season & a happy new year too.
                            PJK

                            Comment


                            • #15
                              Botox

                              Susan, I understand why you went the Botox route, as it seems to actually help, and allowed your son to get off the Haldol, which seems to be even more dangerous. But to my understanding, Botox actually paralyzes the muscles, and is very toxic. I hope it won't cause long-term effects nobody knows about at this point.

                              I am only glad that my tics are comparatively mild, and so I won't even have to consider drug treatments (even though my tics can be quite annoying, of course). Fortunately, none of my five kids have inherited the TS, and I only have to make those decisions for myself. It must be much harder, when you see your child suffering as your son is.

                              I am also curious if he has been able to go back to school.

                              Ursula
                              German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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