We thought Kaitlyn had bedhead before!... now she has tons of electrodes glued to her head!
She is napping peacefully though. The EEG has begun and we spoke with the neurologist. We are going to try and take her off the Keppra to see if she will have another episode so that we can catch it on the EEG. This will help give us a true picture of what's going on. Obviously Kaitlyn's safety is the most important thing and we won't let her get past a certain point without intervention.
We are really hopeful that this will give us some answers so that we can plan what Kaitlyn's future will look like. Those hard decisions that have to be made regarding whether we would take her back to the hospital or if it is her brain telling her body not to breathe and we stay at home and let it run its course.
Again, we are hoping that these episodes are seizures and that Keppra, or another anti-seizure med, will be able to help her for awhile. It won't fix anything related to Niemann-Pick but it will help to prevent some of the seizures and improve her quality of life for a certain amount of time- hopefully. This is best case scenario.
 |
| EEG |
She is napping peacefully though. The EEG has begun and we spoke with the neurologist. We are going to try and take her off the Keppra to see if she will have another episode so that we can catch it on the EEG. This will help give us a true picture of what's going on. Obviously Kaitlyn's safety is the most important thing and we won't let her get past a certain point without intervention.
We are really hopeful that this will give us some answers so that we can plan what Kaitlyn's future will look like. Those hard decisions that have to be made regarding whether we would take her back to the hospital or if it is her brain telling her body not to breathe and we stay at home and let it run its course.
Again, we are hoping that these episodes are seizures and that Keppra, or another anti-seizure med, will be able to help her for awhile. It won't fix anything related to Niemann-Pick but it will help to prevent some of the seizures and improve her quality of life for a certain amount of time- hopefully. This is best case scenario.
I have been following your blog since I read about you in the Observer. My prayers are with you and Kaitlyn, of course. E. Shelton, Stanley, NC
ReplyDelete