I just got off the phone with the neuro and I am a MESS!
First, she said that the radiologists at Childrens are not sure an MRI of the artery and veins will show much because they really felt they looked good on the regular MRI. They are going to contact some doctors at the Univ. Hospital Radiology to get their opinion.
Then I questioned her on what she kept saying yesterday…”This could happen again and it could be worse the second time.”
Her recommendation is for my son to never play any sports again except tennis, swimming and track.
How do I have my son who is extremely active by nature change everything with absolutely no medical evidence of injury other than clinical findings. Is it just me or isn’t just as likely that he had transverse myelitis or GBS without diagnostic tests as well?
She said it is not because he wasn’t ill before and had no fever in the prior week or so.
He could have had a bad stomach and we he would not have told us. He looked ill that morning and had a severe heartburn like feeling. Couldn’t it still be a weird virus?
I would change his life if there was a true medical reason but how do I do it on a guess?
What would you all do? One side of me would love to shelter him. He is walking and smiling again and will only be a kid for 7 more years, if she is correct and the next time he was permanently paralyzed….not playing sports would be trivial. That being said, we would be making this decision on know medical evidence and he would be more likely to be depressed, miss out socially and physically since he really doesn’t like those other sports.
I realize this is trivial compared to most of what people are experiencing on this board. It is great he is improving but the fear of going through this again is tearing me apart.
Thanks for hearing me rant!