Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 10-13-2013, 09:26 AM #1
lakens mom lakens mom is offline
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lakens mom lakens mom is offline
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Location: Illinois
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Default 16 year old needs help with walking

My name is Julie , My 16 year old daughter Laken has always been healthy until this last 6 months. Laken was on top of a pyramid in cheer and she fell . she landed on her tailbone. After a trip to the ER we were told it was just badly bruised. After a few weeks she was back to normal and back to cheer. She told me that she noticed when she took her shoes off after practice and PE class her feet where purple but no pain. I called our primary and he said just keep a eye on it. after 2 months of this happening she started being woke in the night to very bad muscle cramps in her calf. one night it would not go away. after a trip to our DR he said we needed to run some test now that she is in pain. she had a MRI, MRA, CT of Head. so many blood test. where sent to many specialist as her pain kept spreading. after 6 months of DR's and test we still don't have any answers. We were told it could be a autoimmune disorder . I have researched so many and keep coming back to CRPS. We are now waiting on more blood work and 3 more specialist. but while we wait my daughter gets worse. her symptoms are now
Sever lower back pain, no feeling in toes , feet are ice cold most the time, feet and lower half of legs become mottled and deep purple while standing or sitting over 10 mins. tingling in back of head followed by bad headache ,shoulder pain, ankle pain, heart palpations, if legs get cold they hurt to the touch. nausea, She walks so slow and is in constant pain. No longer can attend school or do anything a 16 year should be able to do. I sure hope someone can give us an idea of what they think, Im so afraid of loosing my daughter and the DR's just cant find out what this is...
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Old 11-14-2013, 09:51 PM #2
curby curby is offline
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curby curby is offline
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Quote:
Originally Posted by lakens mom View Post
My name is Julie , My 16 year old daughter Laken has always been healthy until this last 6 months. Laken was on top of a pyramid in cheer and she fell . she landed on her tailbone. After a trip to the ER we were told it was just badly bruised. After a few weeks she was back to normal and back to cheer. She told me that she noticed when she took her shoes off after practice and PE class her feet where purple but no pain. I called our primary and he said just keep a eye on it. after 2 months of this happening she started being woke in the night to very bad muscle cramps in her calf. one night it would not go away. after a trip to our DR he said we needed to run some test now that she is in pain. she had a MRI, MRA, CT of Head. so many blood test. where sent to many specialist as her pain kept spreading. after 6 months of DR's and test we still don't have any answers. We were told it could be a autoimmune disorder . I have researched so many and keep coming back to CRPS. We are now waiting on more blood work and 3 more specialist. but while we wait my daughter gets worse. her symptoms are now
Sever lower back pain, no feeling in toes , feet are ice cold most the time, feet and lower half of legs become mottled and deep purple while standing or sitting over 10 mins. tingling in back of head followed by bad headache ,shoulder pain, ankle pain, heart palpations, if legs get cold they hurt to the touch. nausea, She walks so slow and is in constant pain. No longer can attend school or do anything a 16 year should be able to do. I sure hope someone can give us an idea of what they think, Im so afraid of loosing my daughter and the DR's just cant find out what this is...


I am sorry to hear this. No child should have to live undiagnosed in pain. Please don't take "we don't know" for an answer. Keep hunting for a doctor who will figure it out. Don't accept a vague diagnosis. Keep a detailed list of dates and symptoms - because if this continues, you are going to start to lose track of what happened when - and the better a history you can give a new doc, the better the new doc can try to help. We spent over a year getting a proper diagnosis for our son. It was exhausting!

If this was my child, I would consult a vascular specialist as well as a neurologist. A lot of the symptoms you describe (cold, purple, heart palpitations, calf cramps, headache) can be vascular or neurological in nature (but may not be). The fall may have just brought some other unrelated condition to light (it may not be "because of" the fall).
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