I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, February 7, 2013

Seizure Update

It's taken me a few days to be able to write about the EMU update.  So much stuff going on right now.
Unfortunately Alex did not have any seizures while we were in the hospital (go figure).  My theory on that is she never really got into a good REM sleep.  She was agitated while we were there, uncomfortable and did not sleep well, at all - and as I've mentioned, all of her seizures occur when she is sleeping.
On the fourth day we were all packed and ready to go home when the doctor came in and said one more night.  I think she could tell by the look on my face I was about to burst out in tears.  I could not take one more night in that hospital!  As I mentioned in my last post, I couldn't leave her alone for one second and 72+ hours in the same room is a bit unnerving.   I know a lot of people are in the hospital for way longer periods of time and don't complain, but as I was explaining to one of my friends, when kids are in the hospital, they're typically sick (why else would they be there, right?!?)  so they don't feel good, they don't want to do anything, and they typically sleep - or want to anyway.  Well Alex wasn't sick...and she didn't want to be in that bed all day - and she was mad, and she let me know it too.  It was a constant battle with her to not pull her hair or bite herself - which are the two ways she communicates she's angry or frustrated.  Lucky.
So here's what we do know.  Alex definitely has an abnormal EEG (Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG measures voltage fluctuations resulting from ionic current flows within the neurons of the brain).  But no real surprise there.  She definitely has epilepsy and she definitely has generalized tonic clonic (grand mal) seizures.
The doctor that was rounding the week we were there is almost positive that Alex's seizures are starting as focal seizures.  Here's the best way I've found to describe them:
What Is It?
Nerve cells in the brain pass signals among themselves using both electrical current and chemicals. In a seizure, the brain's electricity is not passed in an organized way from one cell to the next, but spreads over a cluster of cells or the whole brain all at once. When only a portion of the brain is involved, the seizures are called partial seizures or focal seizures. These seizures vary tremendously in their effects on the person's movement, sensation or behavior depending on which area of brain is involved.
Partial Seizures (Focal Seizures)
Some partial seizures are associated with a change in consciousness, even though the person might appear to be awake and his or her eyes may be open. In this type of seizure, called a complex partial seizure, the affected person is unaware of the people nearby during the event, is not aware of his or her own movements or behaviors during the seizure, and does not remember the seizure after it occurs. When the person having a partial seizure is aware of having a seizure, is aware of his or her surroundings and remembers the event afterward, the seizure is classified as a simple partial seizure.
Sometimes a seizure may begin as a partial seizure but change part way through the event to involve the whole brain in the seizure activity, ending with arm and leg movements on both sides and loss of consciousness. When this happens, it is called a generalized seizure. A person who has seizures repeatedly is said to have epilepsy. In 70% of cases, the cause of epilepsy cannot be found. Sometimes, epilepsy can be caused by scar tissue or a brain infection that can interfere with the brain's electrical signaling. Scar tissue in the brain can be caused by head injury, tumor, stroke or surgery.  
So are her seizures starting as focal and changing to generalized?  A question we can't answer right now because we didn't capture one!  Additionally, because focal seizures only impact a part of the brain, some medicines are better to use than others.   Since I'm not happy with the current medication she's on, we are likely going to switch to a "focal" medication.   I really liked the rounding doctor and I haven't been thrilled with my neurologist so I'm waiting to switch at the moment.  My only huge hesitation has been that her current neurologist is very close to home and all of the other neurologists are at MCV - and I really despise going to MCV because of it's location and parking issues.  But, in the end, it's about what's best for Alex and not what's convenient for me.
When you have the in-patient EEG's you also have heart monitors hooked up.  They happened to place Alex's on her back this go round (perhaps another reason she couldn't sleep?) - her skin is so sensitive to any type of tape so this was what her back looked like - (I'm sure that didn't irritate or bother her at all while we there....insert sarcasm there!)

Crazy hair girl - very unhappy someone was touching her head again.

VERY happy to be disconnected, out of pajamas, in her chair and ready to roll! 

She was such a hot mess.  Thank goodness for hoodies :)