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  • tetrabenazine (nitoman)

    Our doctor has just put our son on this drug. It is fairly new he said and I can barely find info on it. He also wants to test my son for strep anti-bodies, copper and has mentioned PANDAS. Is any other child on this drug. We also have to see a psychiatrist for the talking to himself that seems to be increasing.

  • #2
    tetrabenazine (nitoman)

    HI Rose! I was on TBZ about 10 years ago, it was still being tested for TS in various movement disorder clinics. It's out now, and has been out in Europe for a long time...30+ years. Some have had good success with it, some not. I was on it for about a year...I'm not sure if the TBZ is what caused my tics to slow down and get less severe, or whether they would have waned anyhow, but it did work, more or less. However, I found the side effects difficult to tolerate. It made me very sedated...never was one for napping, but during my TBZ year I would nap 3 to 5 hours every afternoon!! One side effect is depression, which I did not find to be a problem at that time. The worst thing about it was the akithisia (sp?)...squirmy unpleasant feelings in my thighs...the only thing that seemed to help that was moving, so I would pace to try to get rid of them. When I was on TBZ, I don't believe it was being used in children but I might be wrong. Hope this helps a bit!

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    • #3
      tetrabenazine (nitoman)

      Thanks for your reply. My son has been on it for 2 weeks now and we haven't noticed any changes or side effects. His dose is 12.5 mg in the morning and another 12.5 at nite. Because it is fairly new to children our neurologist suggested we start at min. dose. However on the weekend I gave him 25 mg (whole pill) in morning for 2 days and it did make him tired. Even Glenn found it being drowsy. But his tics ever so slightly let up. We went back to regular dose, and we are trying to get our Dr to increase it. Iknow it takes time for meds to work. My son is 15 yrs old. Do you remember how long it took to start working and may I ask what size dose you had? It is like a light switch was turned on in my son, that is how quickly this all started. We are keeping our eyes open for depression but he is just so happy that he is on a med.

      Rose

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      • #4
        tetrabenazine (nitoman)

        I'm sorry, Rose...I can't remember. It seems to me that I was on 75 mg per day, but I might be wrong...ten years ago is a long time to remember!! The lessening of tics was gradual for me...maybe over a month or so.

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        • #5
          tetrabenazine (nitoman)

          Read the the product monograph for Nitoman tetrabenazine here:


          Akathisia: A movement disorder characterized by a feeling of inner restlessness and a compelling need to be in constant motion as well as by actions such as rocking while standing or sitting, lifting the feet as if marching on the spot and crossing and uncrossing the legs while sitting. People with akathisia are unable to sit or keep still, complain of restlessness, fidget, rock from foot to foot, and pace.
          Steve
          TouretteLinks Forum

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          • #6
            tetrabenazine (nitoman)

            I am glad to see youi posting such good info. Unfortunately our neurologist doesn't communicate very well and our family dr. is trying to get us into Sick Kids for an evaluation. My son is having auditory hallucinations along with his tics. He does not sit still very long. His teachers say he is always suddenly stand up and charge to the front of the class or walks around his desk always talking to himself. He talks with himself. We need to find out what is wrong before any depression starts. The med is not working and we are on the lowest dose. Can you explain akathisia? I will try to find it on the internet as well.

            Thanks Rose

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            • #7
              tetrabenazine (nitoman)

              Rose,

              In addition to the definition of akathisia in my posting of May 3 in this thread, what additional information are you interested in?

              Is the neurologist in question on with a professional interest in TS or one to whom you happened to be referred?

              What are the circumstances that make communications difficult? Please describe a typical situation where you have difficulty getting the info you would like.

              Perhaps we can suggest some strategies that might help. Physicians are often overworked and distracted so by understanding the situation in which you find communication with this person difficult, perhaps we can suggest ways of unlocking this physician's information vault.
              Steve
              TouretteLinks Forum

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              • #8
                tetrabenazine (nitoman)

                When Glenn first started shaking his arms crossed at the wrist, standing up and and played drums at his side, closing his eyes and breathing hard out of his nose, whispering to no one in particular. Now he has escalated to talking to himself out loud, almost like a conversation, still has all the other tics,now in school he walks around his desk, and a new one( not sure if it is med related) standing up and running to the front of the class and then walking back. He says he knows he does this but can't stop. Ou family dr. sent us to an adult neurologist who sent us to a ped. neurologist with the recommendation that he is very good. He is a consultant in neurology and eeg for children and adults. He said ts, adhd and possible ocd. I can understand the inattentive part of adhd. He sent us for mri, sleep eeg and eeg. All came back normal. Our follow-up last month was he is not sure yet, doesn't know if he may be schizophrenic,and ordered blood work for testing of anti-bodies to strep, measles and copper and put us on nitoman. When I called after 2 weeks of seeing no change of this med, I was told that the dr. doesn't take phone calls and to leave a message that I would like to increase the morning to 25 mg.Well it has now been 11 days and still no phone call. I did call on Mon but the secretary says he is always busy and maybe he hasn't read my message yet. At a school meeting yest. his teacher recommended his daughters neurologist at Sick Kids. I went to our family dr and asked for a referral and mentioned the talking and dr says it looks like auditory halllucinations and he is still ticcing. As of today we haven't heard from Sick Kids or the other neuro. We are also going to see a psychiatrist but can't get in till June however out family dr wants us to deal with Sick Kids. We live in Whitby and go to North York to see our first Neuro.
                So after that long story can you give me advice. I meant to ask if there was med for this akathisia because this new thing sounds like it. My son is 15 yrs old and this all started last fall with it reaching a high in Dec. It is like a switch was turned off in my son and we don't know where to find it.
                Are you a dr? You seem to be very well informed. I enjoy reading your posts.Thanks Rose

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                • #9
                  tetrabenazine (nitoman)

                  Rose,

                  I am not a physician, though I have a strong interest in TS because I am afflicted with it. I was diagnosed late in life, in my forties, and understand the frustration felt by someone living with TS and not knowing what it is.

                  Glenn's behavior needs to be assessed by a competent physician who can evaluate Glenn's complete state of health.

                  Your frustration is very understandable, because of your concern for Glenn and the seeming indifference of those you have consulted.

                  How is your relationship with your family physician? Can you sit and talk with him/her in a meaningful conversation without distractions?

                  If so, perhaps your best course is to let your family physician be your best ally in making the follow up contacts with the specialists you have consulted. I would communicate to your doctor that you want Glenn to be seen by specialists who have competence in your son's condition, regardless that specialist's hospital affiliation.

                  It seems odd that a physician's secretary would dismiss your call to tell you the DR is too busy. I would report this to your family physician in your conversation, and further explain your concerns about the possible side effects to the medication that was prescribed by the neurologist.

                  I am not familiar enough with the medical system in Ontario to comment on whether you have any options in choosing a specialist when a consultation is requested by your family physician.

                  My opinion would be to first target your family physician as your primary contact person, and see if he/she will assist you in getting the information you need from the neurologists.

                  Do you feel you might have a better rapport with the neurologist recommended by the teacher? If the neurologist is more accessible and has an interest in Glenn's condition, then it may be worth a visit.

                  I would caution about going from doctor to doctor until you can determine if the people already seen can help.

                  Your referral for the Psychiatrist is not that far away, and you may want to ensure that person has an understanding of Tourette before the visit. If you can have a short conversation with him/her prior to the visit, or ask around about this doctor, you can get some insights..

                  I would not venture an opinion on whether your son's behavior is based on side effects of medication or on his medical condition. This needs to be evaluated by a competent medical professional.

                  Continue to keep us posted on your progress, as the ideas and experiences of others may help you through this difficult time.

                  Regards,
                  Steve
                  TouretteLinks Forum

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