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  • Daughter with CP has RSD. Need help

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    Old 06-19-2005, 06:40 AM   #1
    HelpForPortia
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    Daughter with CP has RSD. Need help

    Hi everyone. I have been trying to find the most information I can to help my daughter and stumbled across this board. I am hoping someone.. anyone can help.

    My daughter, Portia, has Cerebral Palsy. She has had to endure 8 years (age 2 1/2 until she was almost 11) of wearing braces on her legs to lengthen her heel cords so she could walk normally. She is mildly retarded and a very active child. On January 7th, 2005 she fell during Adaptive Physical Education class. She insisted her leg was broken and the teacher yelled at her and told her to scooch to the wall and hold on it to walk to the nurse's office. She followed the teachers orders, stood up, took a step, heard and felt another crack and felt a warm sensation, like the gooshing of blood inside her leg. She fell back to the floor and cried. They did finally get the nurse and a wheel chair for her. I went to the school and brought her for x-rays. (They called me and said she thinks she broke her leg, but they think she may have sprained her ankle.. and asked if I wanted to come get her.. DUH!) She ended up having a broken fibula and the end of the tibia, where it meets the ankle was broken off. She underwent surgery, an a plate was inserted with 6 screws to hold the fibula together (It was displaced about 10cm), and a pin and screw were inserted to hold the tip of the tibia in place. She was in a splint and cast for almost 2 months. Following the removal of the cast she had to have whirlpool therapy to help heal a decubitus ucler, which had formed on the back of her heel from the cast. She was also getting passive ROM and strengthening at therapy. The end of March the Dr. ordered her therapy to be increased to 5 days a week and to include 3 of the 5 days as active ROM and Strengthening and the other 2 in the whirlpool for her heel. Then finally at the end of April she went on 5 days of active PT and no whirlpool. She has made little progress in therapy and still remains in a wheel chair. She complains of pain when they try to touch her foot and leg and refuses to cooperate. She also complains of pain throughout the day and it wakes her from a sound sleep. Her Dr. suggested in April that we get a second opinion, since he does not specialize in children with Cerebral Palsy. He spoke with and faxed her records to all 3 doctors in the area that specialize in CP. All of which turned her down. So after her appointment in May I called the Shriner's hospital in Springfield Ma. and they scheduled her for June 16th. At the appointment there we learned that Portia has developed RSD and will have to go through intense and aggressive physical therapy, desensitization and pain management. On Friday, before her PT appointment, I had a meeting with her current therapist and he advised me that their facility is not equipped to do the aggressive PT the Dr. wants for her, and that we will need to find another place to take her that is better suited to work with her. He explained that the therapists there have never really had to deal with children and especially never one with CP, and that they would just be holding her back. I understand their situation, but now I need to find a place that is willing and able to do her theapy. So my question is, does anyone out there know of a place for children that has been successful and is willing to do Aggressive and Intense PT and make them keep going and work hard? I'm afraid that with what is available around here, my daughter will be in a wheel chair for the rest of her life.
    This whole experience has been life altering for everyone, especially her. I have seen my baby girl go from a happy active teen, who love dancing and running around to a depressed, wheel-chair bound teen. Please help!

    Laura
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    Old 06-19-2005, 07:44 AM   #2
    Jewel2
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    Re: Daughter with CP has RSD. Need help

    Hi Laura,
    I'm sorry your daughter went through so much trauma. I know how hard it is for a mom to watch her child suffer.

    I just have to jump in and say that 'intense and aggressive PT' would be absolutely torturous for somebody with RSD. Does the place she's going to know much about RSD? There is a fine line between therapy that helps and therapy that creates more problems. The therapist must listen to the patient - if the therapy is causing unbearable pain, then it should be stopped. In RSD, pain begets more RSD pain, and the cycle continues. What is needed in RSD is therapy that helps increase strength and mobility without over-the-top pain. I've heard that hydrotherapy is very good for leg RSD. Desensitization should be very,very gradual. I had over 65 visits to my PT because it was so gentle and gradual.

    I really recommend that you find a pain management doctor who is familiar with RSD. If the therapy only approach doesn't work, then perhaps a block would be beneficial and would allow better therapy to take place.

    Again, I'm really sorry she is going through all of this, especially at such a young age. The good thing is that children are more likely to get their RSD into remission. Let's hope that's the case for Portia!

    Best wishes,
    Julie

     
    Old 06-19-2005, 08:23 AM   #3
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    Re: Daughter with CP has RSD. Need help

    Hi Julie and Thank you for getting back with me. Her Orthopedic Dr. is not well versed in RSD; however, the pain clinic at Faxton (Utica, NY), or so I've heard, is. My main concern is finding the right place to take her that knows what to do to help her. The United Cerebral Palsy Center suggested using the PT center they use for their patients; however, I'm afraid the "Wrong" approach with those who do not know RSD could harm her more than help. I was hoping someone out there has had success and could refer us to a place that knows what they are doing.

    Laura

     
    Old 06-20-2005, 12:52 AM   #4
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    Re: Daughter with CP has RSD. Need help

    Since your daughter has been in hydrotherapy, I am serious going to suggest that you try water exercise in a deep pool with flotation belt, perferably with someone that knows about RSD but even without that if she can stand warm to cool water get her to a pool. I have RSD in my leg and I can say with all honesty that acquasize, gently at first with periods of stretching in the water and on the side of the pool, and then more aggressive and for long periods, kept my muscle from atrophy and, in fact, built muscle, also cooled leg that was hot without using ice which is a no no, although I find cold gel packs good. One cannot stress too much that sitting around is not the answer and will do her more harm than good but that pushing it too hard is wrong also - that is why the water is so good - you provide the pressure through the amount and speed of your movement and the waters resistence - you should go with her if you can - is so great - there is no pressure and it gradually desensitized the leg so I could work harder, stretch more. Stretching is as important as the exercise and movement to prevent shortening of tendons and muscles. If I do not go for two weeks I stiffen right up. I am on Clonmazepam and Neurontin as well which take the edge off, but I truely believe the pool has helped as much or more and that more people should give it a try if they can handle water at all. Deep water with floatation belt to prevent pressure on legs and feet is best. It takes a while to see results but while you are waiting to find the ideal place for her to go, check into your local pools and their therapy programs. Private sessions are available. Good Luck
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    Old 06-20-2005, 04:20 AM   #5
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    Re: Daughter with CP has RSD. Need help

    Thanks for the reply. I have tried getting her to join me in water aerobics, but that was a few months back. She just kicked and screamed and said the water hurt and she was afraid the metal in her leg would make her sink. She ended up sitting on the steps for the entire class. Thank you for the reminder also. I just pulled out the book for the other YMCA here and they actually have a heated therapy pool, with ROM exercise classes Mon, Wed, and Fri 10:30 - 11:15. I'm going in to pack her swim wear now! I'll let you know how it goes.
    Laura

     
    Old 06-21-2005, 12:02 AM   #6
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    Re: Daughter with CP has RSD. Need help

    Glad to hear that you are going to give it a try. I pray that she will be able to handle the warm water and get some real movement going. She can work into it slowly - if possible i would go every day for a short period at first and then longer periods less frequenly. Good luck. Laura.
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