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Pain & Fear in Easy Stander for daughter

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    #1

    Pain & Fear in Easy Stander for daughter

    Hi All,

    Yesterday at PT my daughter (12 yrs. new quad) was put in an Easy Stander. There no no upper body supports and she was crying and said it hurt. We tried to keep working through some of it but finally I said to bring her down. I was holding her shoulders/head the whole time for support and I think some of the pain was coming from me holding her, maybe fingers digging into her shoulders. I'm not sure what the PT was thinking...that I would just hold my daughter's shoulders for a half hour in the stander or what.

    Anyway, I can't stop thinking about the session and now am kind of mad she was even put in the thing without the right accessories. My question for the collective wisdom here....I'm leaning toward new PT. Am I being too protective or am I right on?
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    #2
    Originally posted by Domosoyo View Post

    Anyway, I can't stop thinking about the session and now am kind of mad she was even put in the thing without the right accessories. My question for the collective wisdom here....I'm leaning toward new PT. Am I being too protective or am I right on?

    You are right on. I got very nauseous the first couple times in the standing rig. My first couple of sessions I just went as high as I could, it took a good 5 session before I was perpendicular to the floor. You daughter should never do anything in the rig that hurts or scares her. Maybe you should look for a new PT. I did my rehab in the cities at Courage Center, they were great and it looks from your profile you are close to there.

    Tom

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      #3
      I think you were right on as well. I too got naueous and dizzy the first time...so to put her all the way up was wrong.

      Second...there should have been other devices to keep her upright and to reduce the pain. There may have needed to be another strap or support to hold her in place.

      I think you should look at other options.
      "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

      Comment

        #4
        Agreed. Your daughter should not be put in a device that is both terror producing for her and inadequate in support for her upper torso. They should not have pushed this without the proper equipment.

        Comment

          #5
          Thanks all, just after seeing a few responses I can tell my gut is right and that we need to move her. My husband and I are going to divide and conquer today and get her into Courage Center. I am just not seeing any kids with her level of injury at the place she is now and maybe they just don't have as many SCI's come through there as they said....well, maybe they do but some of the therapists act like she is their first kid with SCI.

          We are on the move, whatever that takes.

          Comment

            #6
            Agreed with the rest. Sounds like an untrained/unskilled therapist, very dangerous. I have heard good things about Courage Center as mentioned above. Good luck!

            Comment

              #7
              Are you sure the PT had the standing frame set up correctly? Every standing frome that i have used or seen has a front pad that can be adjusted up or down so its positioned against the chest holding the torso in a up right position. There should not have been any reason to hold her upper body up. But i agree the PT should know about this adjustment and adjusted it according to your daughters height........
              T12-L1 since 10/12/03

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                #8
                domosoyo,

                Another member described a terror filled incident in a standing frame in which they could feel Autonomic Dysreflexia-Hyperreflexia (blood pressure rising and pulse-rate dropping) coming on, requested to be removed from the standing frame and was denied by the PT's so that person could work through the pain. This person had a stroke and passed out and was fortunate to have not died from cerebral hemmorage or had residual damage. During AD-H, excessive catecholimines are released which include norephenedrine (a neurotransmitter), that can turn a gentle touch into a sensation similar to a bullwhip. If the PT did not monitor your daughter's vitals during this procedure they are incompetent and should hear about it.

                Joe

                Comment

                  #9
                  30 minutes first time up sounds excessive even if the rig was properly configured.

                  I recall spending just 5 or 10 minutes up my first time and being lowered over my protests. My PT was within touching distance the entire time and I wore a BP cuff to continually monitor my BP.

                  Sounds like a very bad experience for your daughter. I'm sorry to hear it.
                  My blog: Living Life at Butt Level

                  Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

                  "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

                  Dawna Markova Author of Open Mind.

                  Comment

                    #10
                    I'm just so thankful for all of your comments. The last week I've felt really isolated and hearing back from people that know exactly what I'm talking about is what is so great about this site and this group of people. I'm tired of giving mini-lectures to people about SCI right now and need a break. So nice not to have to explain yourself!

                    Well, after the crap PT session we had a stellar OT session and she really likes her OT. Her OT is more experienced. I hate to move her now over one PT. Dad, kid and mom should probably talk more about this. I KNOW I will be looking to stay away from that PT and I'll be much more pro-active in upcoming sessions.

                    Ready to get jacked-up on Dew and go all spider monkey on them.
                    (tip to Talladega Nights)

                    Comment

                      #11
                      This site is great. I have only been on here for a month or so and the support is awesome! You will get honest responses from everyone.

                      My Sarah has only been in a standing frame 3 times since her injury in Dec 2008. (She actually hates the piece of equipment but we are in the process of getting one.) Each time that she was in the frame, she was was very safe and secure. I would make sure that the PT is sure of what they are doing. I did not have that feeling of insecurity for her.

                      Comment

                        #12
                        My son started with a tilt table before progressing from there.

                        Is she still in patient?
                        Ugh, I've been kissed by a dog!
                        Get some hot water, get some iodine ...
                        -- Lucy VanPelt

                        Comment

                          #13
                          I don't like what I am hearing either. My first time in a stander was very brief. We stopped at stages, and my BP was monitored throughout. I don;t remember if I got fully up, but if so it was for merely a minute or so.

                          And I am an adult, not a frightened child.

                          I would be looking for a new PT, or having a serious discussion with the one you have. If she truly is the first sci kid they have had, I would move her. Agreed, they need to get experience somewhere, but not with my kid!

                          In my opinion, 30 minutes in a stander first time out, without proper support is negligent. And they should have been monitoring her BP.

                          You say her OT is more experienced, can you change PTs? Again, I would want someone with experience.

                          If not, and you switch, I am sure she will find people she likes at the new place as well.
                          T7-8 since Feb 2005

                          Comment

                            #14
                            Just want to clarify a few things that have come up.
                            She was using a tilt table successfully, this is not the first time in the Easy Stand but it WAS the first time with that PT.
                            We started to get her up and the whole episode lasted about a minute before I said to bring her down because of the pain and crying.

                            BP will be monitored more closely next time. What melodiclogic22 said is really scary but totally realistic. Usually we do BP checks, even on the tilt table, every few minutes or so.

                            Comment

                              #15
                              I am less concerned now, that they brought her down so quickly. I think I misinterpreted your 30 minute comment .... you we referring to how would you do this in the future at home?

                              Was the easystand set up properly? They are quite adjustable, and if it were used for another client in between, perhaps this pt didn;t get it right?


                              But they should definitely take her BP before going up, and is she complains, take it again to determine if it is BP related, or something else. For me, the concern was low BP not high, they were worried that I would pass out.
                              T7-8 since Feb 2005

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