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Thread: New From British Columbia

  1. #1
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    Default New From British Columbia

    Hi. My name is Zoe. My 13 year old daughter Raven has Cystic Fibrosis. She has been on multiple gastrointestinal meds, since she was a baby and has recently been taken off of them as apparently they can cause movement disorders in children. It is very much looking like medication induced TS is where she is at. I'm here to learn as much as I can so I can help her cope. She was already struggling emotionally with CF and this has really stretched her coping ability thin.

    Here's a link for some info on the meds that can cause multiple movement disorders. Raven was taking ranitadine, omeprazole and domperidone...

    http://www.reflux.org/reflux/webdoc01.nsf/487b3ba0c2f1a4ff85256ff30009f061/fdb3ea9e635ff41d8525702e001b6f6b/$FILE/Tardive%20PGMay04Article.pdf
    Last edited by Zoe; April 22, 2016 at 07:44 PM.

  2. #2
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    Default Re: New From British Columbia

    Welcome to the forum, Zoe and than you for joining us.

    Sorry to hear about your daughter's situation. Was your daughter assessed by a movement and tic disorder specialist?

    To help understand your daughter's situation, would you elaborate on how her symptoms are affecting her with the following questions:

    gastrointestinal meds, ......... as apparently they can cause movement disorders in children
    Which GI medication(s) is/are thought to be associated with drug induced tic disorders? We usually hear about movement disorder complications being associated with neuroleptic medication.

    What is the exact nature of your daughter's tic or movement symptoms? Are they motor tics, phonic or vocal tics, stiffness,or rapid movement?

    Did the symptoms evolve gradually or suddenly, like overnight?

    Has your daughter ever shown symptoms of other disorders such as OCD, ADD, anxiety or mood disorders, or sensory processing?

    What treatment plan has been proposed for her movement disorder?

  3. #3
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    Default Re: New From British Columbia

    Interestingly, the GI meds are neuroleptics just like antipsychotics. She started as a baby on ranitadine and later switched to omeprazole for reflux, as well as domperidone for slow gastric emptying.

    She had seen everyone from mental health specialists to neurologists. They were trying to imply it was something wrong with her psychologically but I knew that was not it. I researched non stop and kind of stumbled on the info about the GI meds and her CF doctors took her off of them, although if the symptoms are late onset they are apparently not reversible and she's been on these meds all her life.

    I guess the most obvious signs started many months ago when she started to get these weird limb jerks. We'd be doing her CF care and all of the sudden her leg would kick out, or her arm would flail. It was very random and we brought it up with her doctors but it was pretty well ignored. She started having these weird passing out spells. They had been keeping an eye on her blood sugar due to CF related diabetes and thought it was that then thought maybe narcolepsy/cataplexy Things got pretty crazy and she was in and out of emergency as it seemed everything hit a peak, the sleep disorder behaviors along with the movement disorder issues. It was a very scary time as no one really had any idea what was going on.

    She has ALL the tics. You name it, she does it. From vocal.. words, phrases, swears, noises, breathing, to motor tics that can be anything from obscene gestures, pinching, hitting, hair pulling, throwing things, touching, spitting, dancing, trying to put her hands in things from glasses of milk to boiling pots of water, and some really weird things like trying to climb out windows, over railings, running full bore and not being able to stop, which is terrifying when out in public as she will run into the road if you let her... the list goes on and on. My guess is she has multiple movement disorders. It's pretty well taken over her life as it's CONSTANT. She now essentially hides in her room or paces around the house on her phone because if she tries to hang out with me she starts hurting me and feels bad. I've had to quit work to be home with her as she needs constant supervision and is no longer capable of handling any of her CF care independently. I think that is one of the worst part of it, that she has lost all her independence.

    At one point she was diagnosed with panic attacks but honestly, these meds can cause not only mood disorders but symptoms that can be mistaken for panic attacks so I'm now questioning whether she actually has them or if it is another med side effect. There is SO much going on with her it can be hard to pin point what's causing what. She does not seem to have ADHD, OCD or any other co-morbidity.

    As far as the plan for her, her CF psychiatrist is going to start teaching us about habit reversal therapy. Her liver is pretty shot so most meds are off the table for her.
    Last edited by Zoe; April 22, 2016 at 09:06 PM.

  4. #4
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    Default Re: New From British Columbia

    Interestingly, the GI meds are neuroleptics just like antipsychotics.
    In your research you may have come across the attached (somewhat dated, but rather insightful) paper on drug induced movement disorders.
    Attached Files Attached Files

  5. #5
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    Default Re: New From British Columbia

    I'm very sorry your daughter experienced this. I hope everything is well.

  6. #6
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    Default Re: New From British Columbia

    Hi Zoe, it sounds like you two have really been through the mill.

    You mentioned that the tics or tic-like symptoms started many months ago. How many? I'm just curious.

    My son is 13, has TS, ADHD, anxiety and OCD. He went through a period of narcolepsy. He still does it occasionally but at its worst, he was falling asleep with no warning, in a matter of seconds flat, several times a day. It seemed like a tic to me, but of course it's hard to be sure with some symptoms.

    Sometimes a person with TS is clearly related, genetically, to another person with a TS diagnosis, and in those cases, things are very simple! The rest of us may find ourselves questioning whether certain things triggered or increased the probability of TS. In my son's case, there was trauma at school in fourth grade. I sometimes find myself questioning how I handled things back then. It tends to come at 2 am: If I had handled things differently then, would we not be living with TS now? Of course it might be a total coincidence, that he had the trauma, and that he ended up with TS -- but those questions are very hard to turn off completely.

    Panic attacks in a child can really do a number on a parent! (Once again, speaking from experience.)

    Best wishes. Keep in touch!

  7. #7
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    Default Re: New From British Columbia

    Figured I'd give an update. We battled for many months with her doctors about the cause of Raven's issues. I was sure it was the meds and they kept trying to say it was a conversion disorder, wanted her to see a psychiatrist and put her on MORE meds that could cause who knows what side effect wise. They kept trying to suggest it was trauma related due to her CF. Essentially diagnosing her with hysteria. lol I knew they were wrong. Period. I refused to put her back on the medication. Ironically, I have a friend in the states whose kid was started on similar meds and she started having the same symptoms as Raven... to a T! After seven months off of the meds Raven's symptoms finally were having breaks. First a few days. Then a couple weeks. She's had no symptoms since the end of the summer. That includes the sleep disorder symptoms, the tics and compulsions. Her doctors finally conceded that the meds were the issue but they had not seen it before. Follow your guts parents. If you have good instincts when it comes to your children, don't let the doctors push you into something that you feel is wrong. They were literally threatening to put her on the psyche ward and pump her full of meds she didn't need. I was angry before. Now I'm just worried for other kids who are misdiagnosed and parents that are bullied by the system. This is not our first confrontation in which we were proven right. Advocate for your children. Doctors are not infallible...

  8. #8
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    Default Re: New From British Columbia

    Quote Originally Posted by Zoe
    Advocate for your children. Doctors are not infallible...
    Good for you for advocating on behalf of your daughter. No one knows their child better than their parent(s).

  9. #9
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    Default Re: New From British Columbia

    Quote Originally Posted by Zoe View Post
    Her doctors finally conceded that the meds were the issue but they had not seen it before. Follow your guts parents. If you have good instincts when it comes to your children, don't let the doctors push you into something that you feel is wrong. They were literally threatening to put her on the psyche ward and pump her full of meds she didn't need. I was angry before. Now I'm just worried for other kids who are misdiagnosed and parents that are bullied by the system. This is not our first confrontation in which we were proven right. Advocate for your children. Doctors are not infallible...
    Hi Zoe,

    It's sad to hear everything you and your daughter have been through. I'm glad your anger has subsided. There's a lot to be said about that gut feeling "something just isn't right and I think the medication could be causing it." Sadly doctor's don't live with their patients and tend to take reported drug induced side-effects as "that's all that can happen" and can forget that there is always a possibility of one that hasn't been seen before. Being 1 in a million does not change the fact that there could be one. They also have to know about a lot of illnesses and we as patients or parents have a more defined and very focused learning about our specific problem(s)

    I think a great example of a parent's focus and determination is Augusto Odone's relentless search for a cure for his son Lorenzo's adrenoleukodystrophy (ALD). Lorenzo's oil is not a miracle cure for ALD as let on in the movie but Lorenzo Odone, died of pneumonia in May 2008 at the age of 30, having lived two decades longer than originally predicted by doctors.

    The link to the Wikipedia article of the movie : https://en.wikipedia.org/wiki/Lorenzo's_Oil

    To all parents: Never stop fighting and advocating for your children!

    To all: Learn all that you can and never fear to question or challenge, firmly, but respectfully, any and all doctor's or expert's diagnosis or treatment plan and more importantly also evaluate the reasoning behind your challenge with the same criteria.
    Gary
    "If at first you don't succeed....
    CRY and CRY again!"

  10. #10
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    Aug 2013
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    upstate NY
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    Default Re: New From British Columbia

    Thanks so much for the update, Zoe. Great work! Best wishes to your daughter.

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