Need answers Peripheral Nerve Vasculitis and paralysis.

[rickilynn]

my daughter has been in the hospital since July 7th 2012. She was found unconscious with breathing difficulties and a fever 106 degrees.  She was put in a medically induced coma. When she finally woke she was able to move her hands and feet when asked to. She then had a sinus surgery but when she awoke she was completely paralyzed from the neck down. Even her vocal chords are paralyzed. The doctors are saying she has peripheral nerve vasculitis . They have tried treatments but nothing has worked. Can someone tell me whom I may contact that may have more answers??? Please I am desperate!!! I want my daughter to recover!

[rickilynn]

she has had no change. thank you. I am still searching for answers!

[Smiley1007]

Hi...I dont have sn answer but I just wanted to say you are in my prayers.  I hope for a speedy recovery for your daughter.  How is she doing?  Are you with a large hospital?   Maybe you should think about a transfer of hospitals.  I am ddealing with undiagnosed symptoms also, its very frustrating.

[rickilynn]

I'm sorry that other treatment was IVIG  instead of EGEF

[rickilynn]

Thank you for responding, They have did all those test and tried Cytoxin and another EGEF? I am not sure if that is correct or not. In each case neither worked. She is still completely paralyzed from the neck down including her vocal cords, Now they are telling me that they have tried everything and there is nothing that can be done. She is in so much pain. If you even touch her it hurts and when she has to be moved she screams. They had to put her back on the ventilator because of another case of pneumonia. When this first happened all of her organs shut down and she was systemic? Now they are concerned she may have pulmonary embolisms and yesterday her lung collapsed. Do you have any idea who I can contact who may have more answers???? I am being told to prepare  myself for losing her and although I don't want her to suffer I don't want to lose her, Please if you can help me in any way please contact me!!!

[Dr Santos]

Hi,
How are you? How is your daughter? Vasculitis or inflammation of blood vessels, which may be due to infection or is thought to be due to a faulty immune system response. Diagnosis is obtained through complete physical examination as well as diagnostic tests such as MRI, electromyography and nerve conduction.  A definitive diagnosis is important because treatment usually requires powerful immune-suppressive drugs. Talk to her attending physician and discuss the management plan. Seeking another neurologist's opinion may also help. Take care and regards.