Hi there, I too am a Mom of a daughter who has RSD. I understand how you are feeling, the helplessness and the frustration sometimes you just want to scream! Your daughter is 16, typical behaviour, ie not doing what she should, taking medications etc. I am guessing that she has a computer. there are some really good websites that are run by younger people that talk about this disease. One is rsd/crps put out the fire, another, rsd/crps sucks. there are photographs that show the varying conditions that can happen is a video on utube that she may be interested in which shows a girl who has RSD, she may be interested in how her disease progressed and the drastic measures she had to take to get better http://www.youtube.com/watch?v=Zo-xQLigqDo
http://www.youtube.com/watch?v=n5aVCJ8-Ahw
Hearing what other people her age have to say may help her understand that this is not a fun thing, can progress and is disabling.
My daughter is older, she was 21 when she developed RSD from a car accident. It started in her left arm, went to her right, then to her feet. She has worked her butt off to get better and have a life. Psychology. Physical Therapy, Drugs (Lyrica and Cymbalta), bio and neuro feedback. She is now in a pain clinic in California where she is having ketamine infusions to try and reduce symptoms and get into a remission.
Your daughter is going to go through many emotions as she learns the truth about this awful disease. a good doctor and psychologist , which she seems to have, will help her. A great Mom like you supporting her, even though sometimes being the brunt of her anger, depression and frustration on realizing what she can't do.
Hopefully she will come around and look after herself, do what is necessary and have a great life.
However, make sure you look after yourself too. It is hard to be patient and supporting if you are dragging yourself and get depressed.
I hope everything turns out well, She will thank you in the |
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