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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • 10 year old with RSD

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    Old 04-30-2004, 12:26 PM   #1
    kimmief
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    10 year old with RSD

    My daughter who is 10 years old has RSD in her left foot. We were diagnosed almost 2 years ago. She is in 3rd stage and we have been working hard in PT for many months. It recently went away, only some pain all the time, tolerable and she was able to be normal (somewhat) for about 6 months. On Sunday night she came limping out of her bedroom, she said it felt like a rock fell on her foot although, she was just lying in bed and now the severe pain and burning is back. We are in the process of moving away from our hometown, does anyone know if stress brings back symptoms or is it just a coincidence?

     
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    Old 04-30-2004, 12:50 PM   #2
    Jewel2
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    Re: 10 year old with RSD

    Hi Kimmie,
    I am so sorry that your little girl has RSD. And how disappointing to have it return after a little bit of a break!

    You will get a lot of opinions about stress and RSD as it varies so much from person to person. For myself, stress does not seem to physically affect my RSD, just how I am able to emotionally cope with it.

    One thing that does make a difference for me is the weather. As soon as the barometer starts dropping and bad weather moves in my RSD gets noticeably worse. Also, temperature changes (hot or cold) in the environment or in whatever I am touching make a difference and will flare things up. (ex: I held 4 cold chicken breasts to slice the other day and paid for it with pain for about 18 hours.)

    I'm sure there are other things, too, but the sad thing is that sometimes we don't have to do anything to be ambushed by this monster - it can just rear its ugly head at random.

    I hope your daughter's RSD settles down right away. I know you are in the midst of moving, but you should probably notify her doctor in case you need to take her in one last time.

    Best wishes!
    Julie

     
    Old 04-30-2004, 06:03 PM   #3
    sharon1030
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    Smile Re: 10 year old with RSD

    Hi Kimmie,

    I just wanted to welcome you. I don't have any wonderful advice (wish I did), but just wanted to say "hi." I'm also very sorry that your daughter has this at such a young age. Good luck with her and the move.

    Sharon

     
    Old 04-30-2004, 06:03 PM   #4
    velveda63
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    Re: 10 year old with RSD

    Hello,
    I'm so sorry that one so young has this horrible disease. My daughter also has RSD. She is 21, and has been fighting it for going on 3 years now. I agree with Julie, which by the way is my daughter's name, that it affects people differently. Stress does tend to make her worse. How she can function with all the meds she is on I have no idea. I just pray that some day they will find a cure.

     
    Old 04-30-2004, 07:24 PM   #5
    Gina2005
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    Re: 10 year old with RSD

    Hi Kimmie and Velveda

    Welcome to the board! Everyone is really great here. This is by far the best online support group for RSD. Anytime you have questions, need information on a procedure, or need to vent this is the place to come.

    Gina

     
    Old 04-30-2004, 08:16 PM   #6
    kimmief
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    Re: 10 year old with RSD

    Thank you, it always helps to find someone who understands, even though my daughter has it physically, I would have to say that I too have RSD.

     
    Old 05-02-2004, 09:20 PM   #7
    Horsie Nutt
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    Re: 10 year old with RSD

    Hi Kim. I am so sorry to hear about your daughter. It is just not right that someone so young should have to fight this horrible condition.

    You've gotten great advice. In my experience, stress has a lot to do with pain levels, and it does cause my RSD to flare, but people are different. It is possible that stress could have triggered it, but RSD doesn't need a reason, it just does what it wants, when it wants.

    You are so correct. The family members of people afflicted with RSD suffer just as much as the person with RSD, minus the pain. It does affect the entire family. Sometimes I think it is harder on my mother and children because they have to pick up my slack all the time, and my kids are often bummed out when I am not up to doing something (like going out to eat or something). We have a lot of horses and other misc. animals and by the time we finish feeding, I am ready for the couch, driving.

    There is a thread that was recently bumped up that is very helpful. It's titled, "Interesting RSD Facts, An RSD Letter, Tips for Dealing w/ People In Pain, etc......" I printed out each of the letters/poems seperately, and shared them with my family, friends, and doctor.

    I hope your daughter's foot calms down very soon. Please keep us posted. I hope your move goes smoothly.

    Cathy

     
    Old 05-04-2004, 08:39 AM   #8
    mother of RSD child
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    Re: 10 year old with RSD

    I'm sorry to hear about your daughter. My daughter fractured her left ankle last April 2003 and ended up with RSD. She was 10 years old at the time. I completely understand how you feel. It's really hard to find a doctor who recognizes RSD let alone treat it. We were very lucky - my daughter was diagnosed less than 2 months from her injury but the treatment was tricky. Overall she's had 6 nerve blocks, been on Neurontin, Ultracet, Catapres, Nortriptyline, Methadone, etc., gone to PT, the list goes on. She's been on crutches most of the time. She went into remission (not completely gone - just lower pain levels) last summer and was able to walk with one crutch. When she started Middle School it came back (stress is DEFINITELY a factor for these kids). She had her first nerve block on Sept. 10, 2003. After it she was in remission for 3 weeks before it came back. She had 5 nerve blocks after that with no success. We were referred to Columbia Presbyterian Hospital in NYC for an evaluation. They ultimately recommended that Shannon be seen by Dr. David Sherry at the Children's Hospital in Philadelphia. He is an expert in RSD in children. I recommend him highly!! He basically said that RSD in children is different than RSD in adults and therefore should be treated differently. First of all he recommended that Shannon be taken off all her medication (stepped down over a period of 6-7 weeks). He also said intense Physical Therapy and desensitization is key to retraining the nerves to break the cycle of pain. They did a thorough physical/neurological exam. She was also seen by a psychiatrist (it took us 5 weeks to get the appointment so they also sent us paperwork to fill out ahead of time including a psychological written exam). She was put on a waiting list for the Physical Therapy program (it can take from 2 -3 months) and we were given an excellent DVD which shows a girl around your/my daughter's age with RSD in her left ankle (like my daughter) and follows her progress through the 2 - 3 week program. Our appointment was on March 1, 2004 and my daughter and husband watched the DVD on March 2nd. From that day forward my daughter started walking - first with 2 crutches, then with one and finally with none. It was very painful at first but as she continued the pain started to subside. We stepped her off all her medications and as of Easter Sunday 2004 she was completely medication free! The hardest part was the desensitizing. We used a box with uncooked rice and started by sprinkling it on her foot and ankle as far as she would let me. We did this every day for 10 - 15 minutes. On the anniversary of her injury (4/4/04) Shannon had been doing the desensitizing by herself and called me to come see her. When I did she showed me how she could toss the rice on her ankle in big handfuls and said "Mom, it doesn't hurt!". I cried and she cried - this has been a VERY long, hard road! Since last October Shannon has been tutored because it was too painful for her to go to school. Yesterday she went back to school for the first time since then. She has been pain-free since the beginning of March. I'm praying it continues! She uses our treadmill everyday to keep active and does other exercises as well.

    The pain is not in your daughter's head!! Don't let anyone tell her differently! It is very real and kids are very resilient that's why they can actually laugh sometimes even though they are in pain. There are a lot of things I learned about RSD - it's more likely to occur in girls than boys and usually prepubescent girls (ages 9-11). Usually the girls are high achievers or very driven (you said your daughter is on the honor roll - so is mine even with the RSD). I understand about the isolation - my daughter went through the same thing. All of her friends basically abandoned her. She felt different and the last thing any pre-teen wants to feel is different. They just want to fit in.

    I'm sorry to have rambled on so but I hope this helps! Maybe your daughter's doctor could look into Dr. Sherry and the Children's Hospital of Philadelphia's program. Even though we didn't have to use the program (hopefully we won't have to) maybe it could benefit your daughter. I am saying a prayer for your daughter as well as my own that they get/stay better!!

    Hugs,
    Donna

     
    Old 05-07-2004, 07:14 PM   #9
    Horsie Nutt
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    Re: 10 year old with RSD

    Oh Donna, how *Wonderful* for Shannon!! I will pray every night that she continues on this path and her RSD does not return. I am glad that you were able to find a good doctor to treat her though, but I am even more GLAD that you didn't need to use him!! Children should not have to go through things like this.

    Please keep the GREAT news coming!!
    Sinserely,
    Cathy

     
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