Mayo Moments

Tuesday, 12 July 2011


I am humbled and overwhelmed by the outpouring of support, love and information we have received in such a short time.  The blog has almost reached 650 views!  So many more brains are working on this problem and I appreciate everyone who has taken the time to read and post.  To think that in everyone's incredibly hectic busy lives, time was put aside for a little girl that most of you have never even met, thank you, thank you THANK YOU!

As I said, we have received so many tips, advice, links and information.  I will be spending today doing more research and compiling a list of items to take up with her pediatrician.

On the good news front, I used my charm and determination to get her an appointment at McMaster with the Hematology department.  They are the doctors that look after her older brother who has an un-named bleeding disorder caused by the platelets not being sticky enough - therefore causing an extended bleeding time, easy and bigger bruising and weak clots that can easily break away.

Anyway, I practically begged them to see her and they agreed.  She will be at McMaster bright and early on Wednesday.  If all goes well, and my husband is insistent and charming enough, maybe we can cut through some red tape and find a back door to the neurology department.

Keep you fingers crossed and the information coming!

Kate and Leah


  1. Sounds a little like a neurological disorder called Cataplexy.

    Wiki: "Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions. It is a rare disease[1] (prevalence of fewer than 5 per 10,000 in the community), but affects roughly 70% of people who have narcolepsy.[2] Cataplexy can also be present as a side effect of SSRI Discontinuation Syndrome.
    Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually the speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. These attacks are triggered by strong emotions such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter. A person's efforts to stave off Cataplectic attacks by avoiding these emotions may greatly diminish their quality of life, and they may become severely restricted emotionally if diagnosis and treatment is not begun as soon as possible.[3]

    Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.[4]

    Arm weakness
    Sagging jaw
    Drooping head
    Slumping of the shoulders
    Slurred speech
    Generalized weakness
    Knee buckling

    When Cataplexy happens often, or Cataplexy attacks make patients fall or drop things, it can have serious effects on normal activities.

    Cataplexy is usually associated with Narcolepsy often accompanied by other unusual symptoms when rarely diagnosed in children.

    See a neurologist

  2. Cataplexy is usually a symptom of something else.