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Questioning diagnosis

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  • Questioning diagnosis

    Hi Everyone,

    We just received a preliminary diagnosis from a pediatrician who specializes in behaviour that my 6 year old son has Tourette's along with ADHD/rage/possibly obsession but not necessarily compulsive. She has based this on an interview with us but still has to assess him in pesron. I was pretty convinced he had the ADHD but was very surprised to find this falls into the Tourette "umbrella" of disorders. I was aware of Tourette's as a tic disorder and never considered it because I never noticed tics in my son. The doctor picked up on it becuase she noticed I had a tic - which I didn't even realize I had. She said sometimes the tics don't develop until they are around 8 years old. He does make loud noises somtimes but not frequently within one day (buzzer, siren, whooping) but I thought they were deliberate rather than voluntary. he had an eye tic a couple years ago that only lasted 2 months. I am questioning her diagnosis but not sure who is best to see for another opinion. I will see my family doctor for a referral but is it best to see another pediatrician, psychologist, psychiatrist?

    This doctor seems to prefer medication - starting with Respiradone to deal with the rage and moodiness, then Ritalin for the ADHD. I'm reluctant. Everyone I've talked to says stay away from meds - they should be a last resort. Try diet/behaviour therapy first.

    Can anyone offer advice? and let me know their experience with meds?
    My husband and I are totally frustrated - my son is moody, grumpy, oppostional, argumentive, etc. - this has been going on for a couple years now.

    Thanks for listening.


  • #2
    Questionable Diagnosis


    It's only natural for us to question such a diagnosis when so many of the behaviours seemed commonplace to us while growing up.
    I was shocked to learn that our daughter likely inherited this from me. I thought it was completely normal to balance things, order things, intently focus on the unimportant (but important to me), and to live by little rituals - the OCD of Tourettes. The fact that I wasn't interested in many things long enough to pay attention, was attributed to others simply being uninteresting - ADHD. Throat clearing and verbal tics...well that was just a quirk. Sure it was.
    The bottom line is, our parents weren't aware there was anything wrong so neither were we.
    Thankfully now we are more enlightened, and our 'problem children' can actually be helped. So can we.

    Our 4 yo daughter was diagnosed by the same criteria by a doctor I completely trust. This doctor also suggested the same medications as did yours. It wasn't a case of wanting to solve every problem with a pill. He said that if any one of the conditions of Tourettes was not affecting quality of life, then that particular condition did not need to be treated.

    While I understand your reservations regarding the medications, I have to tell you... we have seen a remarkable improvement in our daughter since she started on her meds (we have even been told by other parents that she's not allowed to visit their homes unless she's medicated).
    I'm thinking I might even be able to someday soon paint our patched and scribbled walls.



    • #3
      Regarding Medication

      Of course you should decide whether or not to medicate you're child. I have always heard that Ritalin makes tics worse. My son is on Risperadol and it works great for mood and OCD symptoms. My son is 11 and he has Tourettes. He started with a few eye blinks for about a month. Then throat clearing at age 8. When he turned 10 we had new tics. They were head turning and shoulder lifting. His current tic is a breathing tic. He is also on Guanfanicine(SP?) generic for Tenex. Best of luck..feel free to email me.


      • #4
        Questioning diagnosis


        Welcome to the TSFC Forum! Your frustration is understandable and your best strategy is to get as much information as you can about TS as well as current treatments. This will provide you the necessary tools to have a meaningful dialogue with the health professionals you choose to consult.

        Unfortunately not all physicians have a thorough understanding of TS except for some basic knowledge. It is therefore in your son's best interest for you to identify a local health professional with a professional interest in movement disorders and Tourette Syndrome in particular.

        This person might be a neurologist, though not all neurologists have experience with TS...or a Psychiatrist, a Psychologist and even some Family Physicians or Pediatricians.

        You may need to make some phone calls or visit the web sites of some local teaching hospitals for your research,

        Check out the list of TSFC affiliates to see which contact can help you best in the Niagara Region....perhaps the Hamilton Chapter.

        CLICK HERE for the list of Affiliates.

        What resources have you contacted so far?

        Medications are always a benefits vs risk proposition. No medication is 100% side effect free, but a frank discussion with your doctor in addition to your own research can enlighten you on what to expect. Once a prescription is started, be sure to continue contact with the doctor to report any adverse effects, because sometimes a dosage adjustment is necessary, or with some meds the body needs a few weeks to acclimate itself to the new compound.

        Medications can be beneficial for many people. However sometimes the adverse effects are difficult to tolerate, which is why some Touretters prefer to do without meds.

        It may be early to make such decisions at this time, so keep us posted on your progress.

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

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