Need advice on Braydon

[Guest guest]

Braydon 6y/o has been in the hospital this time since saturday with what the

dr's said was bacterial meningitis, now the cultures have grown nothing and the

dr now says it is chemical meningitis, which is the same thing they diagnosed

him with when he was in the hospital 2 weeks ago. He has had a constant fever,

vomiting, horrible headaches, body aches, and his face and neck have been

swollen for two days. Last night he started this thing where he wont keep his

right eye open, and he wont keep his mouth closed, he looks like he is screaming

in pain but no noise is coming out. the dr's thought he might be having seizures

so they did an EEG but we dont have those results back yet. The surgeon ordered

an MRI with contrast and he said the MRI came back clear, he said there was no

built up fluid, no tumors, and no other abnormalities. I said " so there were no

leaks? " and he says " Well yes there was a small leak but that isnt causing any

problems " he said that 90% of all chiari patienst will have some sort of a leak

from the graft after surgery for a while until they are fully healed.

then he tells me that they THINK he has chemical meningitis but officially he

doesnt have a diagnosis for him. He told me saturday that he would not put him

back on steroids because he had already put him on Decadron at the highest dose

possible for almost 2 weeks and if it was going to fix the problem it would

have. But, now he tells me that he is starting him back on the decadron tomorrow

morning because that was the only thing that made a difference.

I don't know what to do, it doesnt sound right to me that there is a leak but

its not the problem?

and if its truelly not the problem then why does he keep getting meningitis?

I'm so frustrated and just dont know what the best thing to do is.

any advice is welcome

Thank You, Janna