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Is it Dystonia? Is it Guillian-Barre? No Diagnosis yet.

My 9 year old son can no longer walk without his Canadian Crutches, he now has up to 3 1/2 hours of pain at night.  His foot is twisted and "locked" into a nonfunctional position for most of the day now.  All of this has happened over the past 4 months.

It all started with the H1N1 Flu shot in December.  Within 5 days he was dragging his left foot, with the foot turned in.  As it progressed, it began locking with tight muscles so that he could not flex his foot and step flat on it.  After about 2 months he began to fall.  The crutches help a lot.

He has had Physical Therapy (no change), 4 MRIs (Brain, neck, hips, lumbar) - all normal, EMG and NCV - normal,
a complete psychological evaluation (normal).  We are awaiting blood test results for genetic dystonia.

It just keeps getting worse.  It has moved into the right foot.  It has also been seen in the right hand after using it a while.

Any other physical causes that may be causing this terrible problem / disease?

Any ideas that may help us to find a diagnosis would be appreciated.

Thank you.
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Avatar universal
Dont give up. Keep asking questions till you know whats wrong.
FYI, recently in Perth, Western Australia, there was a bad batch of the flu vaccine which affected a group of children under 5 years of age. Currently in australia they have asked GPs to stop vaccinating children under 5 till they know whats wrong. Link to news story:  http://www.abc.net.au/worldtoday/content/2010/s2881076.htm
This years seasonal flu vac was supposed to have the H1N1 in it.
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1272082 tn?1343103540
This happened to my dad.  The shot can cause Gillum-Barre.  I'm sure I didn't spell that right.  But it is serious and requires treatment of I.V. immune suppressants.
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