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  1. #1

    A small victory - Paediatric Lokomat

    I just want to share what I feel is a small victory. Sorry if I go over stuff you have heard before but just to give you the full story. My son Sean (the boy with Miss World pics) is 5 yrs old T11 since 07 Feb 06. The Medical profession in Ireland take a very conservative approach to SCI treatment to summaries - "He will do well in a wheelchair". His rehab in the last year has been passive stretching at home and a standing frame. I had to fight to get a Motomed for him.

    After hearing about the Paediatric Lokomat I asked about Sean being able to use this and was told that with Physio and hydro could obtain the same results (which he has no option of getting in Ireland). Also his tone was too high and would not be able to use Lokomat.

    I organised a private trail session in Dec went very well Sean walked nearly 400m in less than 30mins (see video)
    http://www.youtube.com/watch?v=D3jXQFUEGG4
    http://www.youtube.com/watch?v=KJ4W9_77evQ
    http://www.youtube.com/watch?v=5MvbyzgaEVk

    Anyway in January spoke to the consultant who said he would not be able to use Lokomat (showed him the video and report) He agreed to sign the E112 form (this enables EU members to avail of treatment in another EU state). We received the okay for the funding from the HSE 2 weeks ago and I heard today that on the 26th Feb he will start a 5 week session.

    In the meantime funding had been obtained to get a Lokomat in the Rehab in Dublin but not the Paediatric Legs. I have been in constant contact with the main fundraiser to get the Lokomat in NRH. She has been using the footage of Sean trail session to promoting the Lokomat. She had a meeting with the HSE and after seeing this footage (she assures me) they have agreed to fund the purchase of Paediatric Legs. We are going to get videos of Sean treatment and hope to use them to push to get funding for more Lokomat in Ireland.

    I know that this 5 weeks might give Sean nothing or if he gets something that if the treatment is not continued any gains will be lost. My hope that there will be gains and that even though he is no longer a patient of the NRH he could continue the treatment there on the new machine (no guarantees) or will encourage the CRC his current hospital to fundraise to get a Lokomat.

    I have some hope but is is like "yes there is light at the end of the tunnel, its just some days that it appears to be an on-coming train and other days you can see it as sunlight". I don't know if I am due an on-coming train or a drop of sunlight.

    Sorry if I have dragged on. I have read many of your posts i despair the hope stem cells offer - will my son be in his 50's before we have moved on from rats. At least this is something we can do now and if we can go someway to change the conservative attitude to SCI rehab in Ireland it is something.

    Just wanted to share
    Last edited by soimumireland; 02-09-2007 at 08:03 PM.

  2. #2
    I think this is a huge victory and you should be proud. As to whether he'll be allowed to continue using it, who knows? Keep doing what you do, and I bet you'll find a way.

    I think it's crazy that the parents of sci kids have to do so much advocating to get what the products and services their kids need need to thrive, on top of all the advocacy required by any patient or guardian of a patient, plus the full-time demands of being a parent. You obviously also keep yourself educated and up to date on therapies that could potentially help your son. Any of these things are full-time jobs and I admire you for staying on top of it all.

    Well done!

    P.S. I think it is real important that we savor and celebrate our victories although they're never as large as we wish. If we wait for full victories or dramatic ones to relish, we'll get too few celebrations in our lives. Just my opinion.

  3. #3
    Sean is a lucky young man to have you for his advocate. That movement must be good for him.
    - Richard

  4. #4

    5 weeks were so worthwhile on Lokomat

    Just come back from Zurich. We know now Sean is Incomplete T11 Asia C with motor movement to S1 and sensory to S5. They found activity in muscles which we never knew about. and was the 1st place to actually test if he had Sphinter control. They did video of Sean's 1st attempt to walk about 10 steps and at the end of the 5 weeks he walked over 30 feet. His Gross Moter function improved in 2 areas and saw activity in 3 muscle groups go from 0 to 1 or -2. Even the hospital felt the improvement was considerable,

    In Ireland they refused to walk Sean because his arms weren't strong enough. 1st thing they did in Zurich was to strenghten his arms by teaching him to climb in/out of his wheelchair and climb stairs. We came home on friday and Sean climbed down the stairs when his friends came over today. I have a new phrase now when I finally get a meeting with the phyiso is how we can enable Sean. Biggest fear is that the whatever gains he got are lost due inactivity. In Zurich they feel he should have phyiso at least 2 a week and were horrified to find he has not had any treat since last in August 06.

    We are exhausted after being away for so long and although we need a break the fight has not stop. Biggest thing is now to get Sean to do as much for himself ie dress himself and climb stairs, do transfer without relying on his parents.

    Our biggest problem is Sean doesn't understand the important of his exercise and we can't promise him if he does Lokomat for 5 weeks or anything else he will walk again. We have to find ways of tricking him to do it. Tried a tricycle Meyra which does he same function of a motormond but with greater freedom ie I push him along but as he free wheels down hills he might get the urge to move his legs.

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