Special Needs
mommyof4boys
member
Frustration, pissy, and anger at the world
mommyof4boys
member
Is this all normal to feel? Chris' eye doctor wanted to have him have a contrast MRI of the brain. She ordered the test last Tuesday and wanted it done no later than the beginning of next week. It took until today and only because I called to speak to them. I tried to call and schedule the MRI where he will need to be sedated at the place where they told me to. They only had an opening on the 20th and it was for noon otherwise it's December.
I'm pissed that I have to advocate this much for my child to have the medical care he should be getting and WTH is it taking the EYE doctor to order this test? Why didn't the neurologist order it to begin with?
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Re: Frustration, pissy, and anger at the world
I haven't read any of your previous posts, so I have no idea what is going on with your DC, but this is exactly what happened with my son. We asked for tests to be ran, and it wasn't until the eye doctor requested an MRI that we finally got anything done. I insisted that they move up his MRI, but the soonest they had was 3 weeks away since he was to be sedated. I swore to them that there was something horribly wrong and that they needed to do the MRI "stat", but apparently they all thought I was nuts. Anyway, obviously I was right, the MRI showed my son had a brain tumor. I wish every day of my life I had just taken him to the ER months before..... maybe our lives would be different now, maybe my son could have had all of it removed, maybe his surgery wouldn't have been so long and he wouldn't have had a stroke. It's very hard to advocate for your child when people are telling you they know best. Find a good hospital where they listen. I wish we had.
Okay, l just went back and re-read your original post about the seizures..... I don't want to scare you, but if you feel like something is wrong, GO NOW and get an MRI, don't wait!!!!!!!! Please, don't wait! My son's optic nerves were enlarged due to the fact that the tumor had grown so large that it was obstructing the flow of cerebral spinal fluid (CSF) causing hydrocephalus. I am pretty sure our eye doctor knew Emerson had a tumor before the MRI but didn't want to worry us, just nonchalantly told us they would schedule an MRI. Signs of a tumor are seizures, vomiting, balance problems, visual disturbances. Please, like I said, the last thing I want to do is scare you, but when people aren't listening, take it into your own hands.
I pray that there is absolutely nothing wrong with your child.