EEG, ER, ICU & ???

If you look back, you'll see that on Feb 9 Regan's pulmonologist gave her a great report, saying he didn't need to see her again for 6 mos. On Feb 10 she began having major seizures that compromise her breathing. We have been doing breathing treatments throughout the day since then & dealing w/ seizures through the night. We have given her an "emergency stop-seizure" form of valium more than 4 times since then. But she is still struggling. Additionally, in between the seizures she has been "twitching" constantly. Finally, last night the twitches got severe enough where we decided to get her checked out.

This morning, Chantell took her in for an EEG (brain wave test). She was in "Status Epilepticus," which basically means her brain was in a constant seizing state. For most people this is an emergency situation after a 5 minute episode. Regan has been dealing w/ it for hours at a time multiple days the last 2.5 weeks.

She was taken to the ER to give her a different "emergency stop-seizure" drug, which worked! But her breathing was in bad shape. She was retracting (chest caving in under the strain of the lungs trying to take in a breath) badly and could not keep up her own oxygen-saturation rate w/out oxygen supplement.

She's in ICU for now while they try to help her. They've done a chest x-ray that looked OK...and other initial tests look OK, but her breathing is still an issue without a clear explanation. We're in a holding pattern for now, keeping her on oxygen & hoping for her strength to return soon.

Her seizures have stopped & started suddenly at other times over the last 5 years...we really hope we'll see a sudden stop tomorrow. That will be a big key for helping her lungs to do their job. Also, this "status epilepticus" can cause significant neurologic impairment. Her little brain can't keep this up.

Thanks for praying for her & for us.