Friday, June 7, 2013


first of all, I'm typing on my kindle. so be graceful with my mistakes. on november 19 we came to the e.r. with shilo for some weird spell she had. an mri, ct scan, and 1 hour eeg later we were told things were normal and made a follow up with bigs neurologist. february we saw seizures. i videoed them, came to the e.r. and we were told her first mri showed focal spikes. they also were 'unable to do an eeg through admitting her.' we returned home. march we see neuro and have a 24 hour eeg. we are told that she has seizures and we start keppra. i ask for a copy of the report and find out she has focal seizures. over the next two months littles seizures increase in number. multiple er trips. multiple pleas to switch meds. im offered to increase. after the last increase i insist on another eeg since most of her seizures are during sleep and we don't know about them this morning, they unhook my daughter. she can't hold her head up, a telltale sign she's been seizing. i get on the elevators and she has a cluster of seizures. we ride back up where they tell me that on the floor full of people hooked to an eeg to monitor for seizurrs, there is no neurologist available. they can't page one. so i have to go to the er. my daughter spends the next hour and a half seizing and vomiting in clusters. she seized for every doctor who walked in. we got re admitted...but not before being told that they thought she was having infantile spasms. while they are common in down syndrome she was much older than what kids are when they start and should have outgrown them if thats what they were. she has maxed out her dose of keppra so apparently we are going to change meds. there is so much more that goes with this. things like the regression we see after seizures. but what it boils down to is my daughter has been having uncontrolled seizures for six months now. jason and i are beyond indignant at the lack of caring we have experienced over this. mama has let everyone know that this will be taken seriously. we could use prayers for all of us as we embark on another hospital stay. this one was avoidable and we want some apologies.

1 comment:

  1. Just remember that just because you are at "the best" children's hospital does not mean you are receiving the best possible care (spoken by a mama who HATES Duke Children's). If you don't get answers where you are, don't be afraid to consult elsewhere.

    Oldfangled's sister, Amy