Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 10-11-2013, 03:57 PM #1
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You're a good mom to be researching for her.
The symptoms you describe sound very much like RSD/CRPS. But just like Ms. Bram just said it's important for it to be correctly diagnosed and if it is RSD/CRPS the sooner it's treated the better, especially since she's young it's more likey to have remission if it's caught early. "Early" is a loose term and I'm not sure if there's an exact defination for that.
A few things are a given. Same as Bram said: The vitamin C, soft warmth, NEVER ICE, avoid cold, slow gentle movement. Movement is ok if it's uncomfortable just not severly painful.
Try to not allow them to do anything invasive or traumitic near the sites of pain until you know for sure what this is.

Some sort of nerve medicine is good too.
Please find her a good pain management Dr. or Neurologist who is familiar with RSD.
It's very good to stay proactive with this. Wishing the best care for her!
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Old 10-11-2013, 04:46 PM #2
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Thanks AZ-Di - cant believe I forgot the most important thing of all - NO ICE!!!!

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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 10-11-2013, 09:55 PM #3
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My niece blew her knee out doing cheer stunting... still bothers her after surgery..

Did you find an online school for daughter, so she doesn't get behind ?

There might be one in your state that is free, just like the local school.
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Old 10-12-2013, 09:31 AM #4
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(In the us) You can apply to the school for an individualized education plan, and if your daughter is determined to have a disability* then she is entitled to a free appropriate education, which may include tutoring in your home if she is unable to attend school. My daughter was tutored at home for almost a whole year, although the tutoring was only two hours a day.

They need to provide an appropriate education until she is 21 years old or until she graduates from high school, whichever is first. If you haven't already, you should apply as soon as you can, because 1) it takes some time to get an iep in place and 2) if she is old enough and hasn't attended school the might consider her a drop out and say no.

I am not an education expert, but this is just based on my experience with my daughter and things I've heard from others. Luckily my school district has been great, but we have friends who needed to hire an education lawyer to get appropriate accommodations for their son.

*i know may seem obvious that she is needs accommodation, but the education rules are bizarre in my opinion, and even the most obvious disability might not qualify if it is not on their list, so I don't know that chronic pain is on of the disabilities that entitles children to accommodation.
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