Friday, February 8, 2013

Dear parents of kids with Tourette's,

The other day I inadvertently stepped on some toes on an online group (thus solidifying my acceptance into the "extremes" group, but that's a different story).  I'm tired of censoring myself on online groups and trying to play nice.  It's hard to tell someone that is 15- or 20-years your senior that you don't value their opinion.  So often in these online groups I see medical advice traded by people with no medical background.  And I'm tired of it.  The thing is, I have two parents and a whole slew of medical professionals on my payroll.  I've seen so many specialists over the years; and the specialist I'm currently seeing is the last one.  There isn't anybody else he can refer me to.  When he says, "I don't know," it's really because there are no other choices.

The medical advice of a parent that I don't know online, isn't going to be anything I haven't heard or tried before.

So right about now you're asking yourself, why are you asking for medical advice online?

I'm not.

These parents see people like me venting about our day (because who can you vent to except somebody else who really gets it) and they step in to offer medical advice.  And then get mad when you tell them their advice isn't wanted or helpful (or that the advice they're offering is totally whack).  I know it comes from a good place; but really... I just can't get behind it.

If I wanted advice - I would explicitly say so.  But when I'm having a rotten day because I have pinched nerves and because my hands are going numb from carpal-tunnel syndrome, I'm not going to preface my vent with a disclaimer statement.  In my opinion, if somebody does not state that they want help, then don't offer it.

I'm years, countless pills, and many doctors into this diagnosis.  Do you really think that some random person on the internet is going to have heard of something I haven't tried yet?

This has long been my problem with online support groups for people like me with Tourette's.

They don't exist.

Approximately 90% of the people in these groups are parents moms of a child with Tourette's.  There are a few token adults in the group; but the "extremes" (which I don't even count as technically - think me times 10) get pushed aside.  People pity them and feel bad for them, but nobody can relate to it or empathize except other extremes.  The "extreme" group I am now a member of has 10 people in it - including myself.  The main page of the group?  There are over 800 people now.

The moms like to empathize with each other; they talk about how annoyed they are by their Touretter's tics and they trade medical advice.  They rant about their children's teachers but in the same breath say they don't believe in getting their child an IEP because that would "label" them.  Not to be callous, but if you won't label your child, you can't demand accommodations or modifications to the curriculum.  You can ask, but nobody is going to be forced to comply.  They talk about going to due process and suing the school district, which as a teacher upsets me.  I think any teacher, given the chance, would do the right thing by a child with special needs.  But when parents come in upset and angry and threatening, it isn't going to end well for anybody.

These moms blur the line between Tourette's and OCD - as if it is better to have tics than to have OCD.  Because then they don't feel the need to force their child to try and curb the behavior, if it's a tic, you can't do anything about it.  But if you label it OCD, then you should be trying to fix it.  My personal experience with OCD is that if you start allowing the rituals to occur without trying to quell them, they'll only escalate.  I'm working on a blog about it - but here's the situation in a nutshell: compulsions to taste, touch, smell, or lick things or people are not tics.

These moms like to offer people like me advice and sympathy; as though them telling you that they are proud of your accomplishments means anything.  As if them asking you if you've tried Tenex (the first pill everyone with Tourette's is given) is going to help.  But it makes them feel better.  They don't want to hear from us about the bad crap.  They want us to console them when they feel bad about their ticcer in the house.  They want to hear people tell them it's okay when their ticcer is driving them up the wall; they want to be told that they aren't a bad mother for losing their patience with their ticcer.

My honest opinion?  You don't want to hear it.

If I sound ticked off, it's because I am.  I'm tired of not having a safe space to talk about Tourette's.  I'm tired of having people who have no idea what I'm living with trying to help me.  I'm tired of constantly hearing about CBIT or HRT or some magical homeopathic supplement that you think is working.  Tourette's sucks.  It takes everything you have and then wants more.  It's hard to learn how to cope with and it's a fight every single day.  But it's one you have to learn how to fight - doping yourself up isn't going to help you learn how to cope with it.

So you know what?  Here's my unsolicited medical advice.  I know you didn't ask for it - but I'm going to give it anyway.  So there.

Medications don't fix everything.  You talk about how great your kids are doing on Risperidone or Xenazine (tetrabenazine), but do you know what those medications are doing to your child?  Do you understand the risks?  The side effects?  I read one parent talking about how there were no side effects on Xenazine - WRONG!  This is the pill I refused to even try.  There is a high rate of depression and even suicide on this medication.  With my history, there was no way I was going near it.  Insurance does not like to pay for it, making it hundreds of dollars a month for people with Tourette's.  Risperidone is highly addictive and very difficult to get off of.  It causes horrible side effects, including significant weight gain (mine came mainly from Orap, which is in the same class - antipsychotics - as Risperidone).

All of these medications eventually build up in your body; which cause the doctors to try and prescribe more.

Parents ask about Topomax a lot now; even though a lot of us with (bad) experience with the medication caution people about it, nobody listens.

Everybody says, "Medication works differently for everybody.  It's worth a chance."

But nobody says, "Medication works differently for everybody.  Maybe nothing will work."

Is it worth the chance?

Is that anybody's decision to make except the person taking the medication?

Is that the choice a parent should be allowed to make for their child?  How old should the child be until they can make that decision themselves?

The kids know they don't like the pills...  I read time and time again stories about how to get a child to take these medications.  Maybe they shouldn't be taking them...  Maybe there is a reason they are resisting the medications.

Maybe parents should listen.

My opinion - even though I know nobody asked for it - is that it's better to learn how to fight this early on.  Every minute of everyday, I have to fight the impulses in my brain that are trying to make my body do things I don't want it to.  Most of the time, I'm able to win.  But that is with years and years of practice.  If I were doped up on Risperidone or Haldol, I wouldn't be able to think straight - much less deal with my tics.  In my opinion it is always better to be clear headed than be doped up on pills.  What are you going to do when the pills stop working?  When they increase the dosage and the side effects get worse?  When the pharmacy messes up your pills?

Me?  I don't have to worry about those things.  I'm (tic) medication free and loving it.


  1. Thank you for this post. I have tourettes and am currently studying Physics at university. I hated the medication I was on before because it messed with my thinking. I'm currently trying another one which helps a little and have a third I'm going to try to see if it helps at all but after that I don't have any more options because all the other choices would knock me out too much to do my degree. It'll probably sound odd but it's nice to hear somebody acknowledge that there might not be a medication that will help me because I know that and it's irritating to be told I'm not allowed to say it.

    sorry if this comment now seems creepy. My tourettes is fairly bad and I'm looking at getting a service dog to help me but it's uncommon on the UK (and all the services are overloaded so I'm looking at training my own). Your blog on how the service dog is helping you is very helpful and interesting. Thank you. :)

    1. For me, a huge part of accepting my diagnosis (and thus my disability), was accepting the fact that there isn't a medication that will help. I've just added NAC (N-acetyl cysteine) to my regimen, but my neuro cautioned it was for OCD more than tics (if OCD is better, anxiety is better, therefore tics are better) - but I do have mild OCD (checking), so I wouldn't mind if that got a little better.

      I know I won't try any more medications, I'm just now starting to get my health back from the medications (, and I'm not willing to try anything else and risk all the crazy side effects. Congrats on working towards your degree - I'm about to graduate with my masters, so I know how hard it can be, especially when doped up on medications.

      Owen is phenomenal, I don't blog enough about how much he's helping me - once my life gets a little more stable I want to blog more. He is really helping me get my life back... or rather, should I say - he's giving me a life. :)

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