Here are some pictures from the night before and morning of the EEG. We were trying to sleep deprive her in preparation, as this will sometimes bring on seizure activity for the EEG.
Bella's first swim
Exploring
Falling asleep sitting up
Tuesday, May 15, 2007
Medicine is not always cut and dry
There seems to be a huge gray area. When you are a parent waiting on results, and ANSWERS, it is hard to hear things are not definite. Bella's pediatrician called us last night to say the EEG came back normal. It does not rule out seizure activity, but shows there was none during that 20 minute time frame. Well, I could have told them that. She forwarded the video we took to the neurologist and will be following up this week. She could not be sure either way if what she was seeing was seizure activity. She said since there is still some concern there, that the neurologist will probably want to see Bella. Now we wait some more.
Here are some pictures from the night before and morning of the EEG. We were trying to sleep deprive her in preparation, as this will sometimes bring on seizure activity for the EEG.
Bella's first swim
Exploring
Falling asleep sitting up
Here are some pictures from the night before and morning of the EEG. We were trying to sleep deprive her in preparation, as this will sometimes bring on seizure activity for the EEG.
Bella's first swim
Exploring
Falling asleep sitting up
Subscribe to:
Post Comments (Atom)
4 comments:
Just wanted to let you know I am thinking about you guys. I hope you get some answers soon. I can't imagine what you are going through. Let me know if you need anything.
Jeni Lassen
If you get a chance send me your email. Work deleted my address book :-(
Sorry to hear you don't have answers yet. I HATE waiting, I think it is the worst part. At least if you know what is going on you can go forward! I am thinking of you and praying for more good results and that they figure out what is going on once and for all!
One thing I've learned about the various medical fields is that neurology isn't viewed as high on the medical 'totem pole' as other specialties. Mainly because of what you are experiencing - there are no answers because they can't really test - the brain is really only testable when its functioning.
They thought I had a seizure disorder and stuck me on medicine. I was very surprised to learn that the medical they put me on actually caused me to have seizures! My first EEG was normal. A subsequent EEG, after I was on neurontin, showed activity. I stopped the neurontin and subsequent EEGs were normal and for 7 years I haven't had any trouble. Does that mean I'm in the clear for years from now? Nope, but for now I can live my life.
Trust your insticts as far as how she should be treated - if you feel she is having seizures don't stop until you get definitive results.
They have a test they can give her, similar to a cardiac holter monitor (only harder to hide), where you wear the EEG for 'a long time' (not sure how long), but it measures activity over a series of hours/days rather than the 15 minutes a conventional EEG does.
Its great that you caught an 'episode' on video - that may lead to learning about her triggers. Watch what she is doing prior to these events, what she may have had to eat, when she last slept. All of these things will be necessary to learn how to prevent them.
No, medicine isn't always cut and dry, but you can get the results you need if you look hard enough and ask the right questions.
I'm sorry you're having to deal with all of this. Its not fun!
I'm keeping all of you in my good thoughts!
How cute she is, Jess! (my girl has that same Carter's outfit your babe is wearing asleep in her carseat!) I hope you hear soon about the eeg.
Post a Comment