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Thread: Nancy (and whoever else) about Ella's CP

  1. #1
    Join Date
    May 2006

    Default Nancy (and whoever else) about Ella's CP

    Ella has Hypotonic CP. When she was 18 months and not walking her ortho (in FL) took her legs and checked her hips and said, "they will never support walking". 4 months later Ella was running. Numerous times Ella has gone up on her rip tip toe and limped (ella is not a toe walker but dragger). We found out when this happens her hip has actually slipped away from the joint. It is very painful and adults would not be able to handle it...Ella says nothing. Her gait is as such: right hand gaurding upward with any instability or running. She drags her right toe very bad from lack of muscle tone. Her left foot drags but not as bad. We have tried putting one and both in AFO's but then her hips pop out more from the catching. When she walks her right leg (more than left) turns in at a very abnormal and uncomfortable angle. She falls very frequently and does not get her arms out in front of her fast enough to catch herself. Her reflexes are all delayed (legs, arms). Her thumbs fold into her hands and she has no pincher grasp although if reminded can muster up to use it for a moment (enough to get through her evals:-) She usually uses thumb and ring finger in place of pincher. We have tried thumb loops and gloves but because she is so small she wiggles them into the position she wants. She has been in PT since she was 5 months old. I am currently just taking her to a Nuero and not a Ortho. I was advised by her school PT to have her seen quickly by a Ortho. I am on the path of finding one at Vanderbilt as we speak. Ellas Neuro (in FL) told me I would see Ella's full extent of her "brain damage" at around 5. She is 4 years 7 months old and I can tell you it seems so much worse. If she is not W sitting she will tip over. The new puppy has been a help to her since she follows him around all the time and he just loves her to death! Thank you for your help. With all of this said, do you have any suggestions of where I should go from here. Oh and one more thing, She is scheduled for an EMG (God Help US) with the Nuero. I am freaking out and have had plenty myself for my arm. It hurts like a female dog!!!

    Congrats on your husbands Citizenship and getting through your dd botox!

    Thank you and you can email me as well from here!

  2. #2
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006

    Default Calista, I have some ideas for you..however, I have a

    family emergency going on. One of my family members suffers with a mental illness and right now is having a tough time finding the right balance in meds. I've saved your post - and will get back to you in a few days, OK?

    I didn't want you to think I didn't see your post!

    Never a dull moment, this has been quite the week!

    HUGS! N + L

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