confused AGAIN!

Dawn –

Emily has the same kind of strength. She can play all day long, run, ride her bike, roller skate, go to the park, take the dog for a walk & do just fine. She might complain of pain in her leg a bit at the end but she’s perfectly fine otherwise. When she was first dx’d & put into the hospital she could barely walk, couldn’t lift a spoon to feed herself, had NO reflexes, couldn’t get up from a sitting position, etc. After her 2nd IVIG infusion she was running around in the hospital & when we brought her home she climbed up on her loft bed & then jumped on a mattress (that was on the floor). Kids generally respond well to IVIG. That means that it works for them & quickly sometimes too.

I met a woman once whose daughter had Miller Fisher Syndrome 10 years ago. The girl was so bad that she was almost put on a vent. She was in the hospital for 2 weeks & received 10 consecutive days of IVIG. 10 years later there is no sign on disease but she does not have reflexes. Sometimes they just don’t come back.

Did Kevin get an MRI when he had his flare up in March? If he had an MRI with contrast it would show if he had inflammation along his spine. Emily has inflammation from her lower lumbar down but the cranial nerve inflammation she had in the beginning is gone.

You are always going to wonder if you are doing the right thing with these diseases. It’s never easy & just as soon as you think you have it figured out, you are sent a curve ball. It’s just the way that it works.

Talk to his dr again & ask him to explain everything to you. Write your questions down so you can remember them at your next visit. Do NOT leave until you are satisfied with the answers. If you are not satisfied then look for another dr for a 2nd opinion. Beware though that they will want to do their own round of tests. So be prepared for that.

Kelly

Dawn – keep asking those questions, girl! We all learn from them. Good luck and good health!