Tuesday, December 8, 2009

Not quite what we expected

It started by waking up with a couple of inches of snow on the ground. Taryn, Karis, Ryanne and I left earlier than we were going to since both Taryn and I had appointments 45 minutes away.

Taryn got weighed and for the first time she is actually over 40lbs. 40.7lbs to be exact!!!!! We got to wait for our favorite doctor in the airplane room. The rooms are all decorated differently and we usually get the sea turtle room.

We are all excited to see Miss Patty and find out how the EEG results...just knowing that they are going to be normal. Then Miss Patty comes in and I hear the words:

The EEG was abnormal...

Taryn's done everything she's supposed to do. She's taken her medicine without much complaint for the last 6 1/2 years. She's had numerous blood draws and sleep deprived EEGs. We've gone 25 months seizure free. She's been doing great off her medicine. We haven't noticed anything and neither has her teacher.

It turns out that Taryn is actually having seizures while she's sleeping....which of course we would never see or know about. During the EEG and while she was sleeping she actually had multiple burst characterized by generalized sharp waves seen in the absence of a clinical event. Really that just means that she was sleeping like she normally would be and the seizure came without them doing anything to actually cause it during the test.

With the type of seizures she has, it's typical to have one while first waking up or going to sleep and also when she's sleeping. Her having normal EEGs while on her medicine just means that the medicine was working as it is supposed too.

Tonight we start back on her medicine. We've told Taryn is basic terms what's going on and she's fine with it all. Really she doesn't know any differently. She's more upset that she'll have to have another EEG at some point down the line.

We don't know at this point when we'll be able to try again. We do know that at some point we'll try again and get a normal result.

She'll get there...just not right now.

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