A quick update for now ....

For those of you who don't follow us on Facebook, Emily was hospitalized this weekend. She had seizures all day Saturday and then was okay Sunday morning. By Sunday afternoon she was back at it, ending with a 4+ minute tonic-clonic (Grand mal) seizure at 7pm. I gave her Diastat and watched her crashing. I called 911 and the ambulance took us to the local hospital. Turns out her Diastat AcuDials were set incorrectly! Instead of her normal dose when I administered it, she got DOUBLE the dose. By the time we got to the ER her blood pressure and pulse were tanked and she was non-responsive. It took 5 hours, a ton of fluids and some IV something (Dopamine perhaps?) to get her back to normal numbers. Then her blood sugar tanked and we had to follow that with D25 boluses. The blood sugar drop is her metabolic disorder acting up, because of the other drama.

She was finally stable enough around midnight to be transferred by ambulance to children's hospital. We did an EEG Monday which showed seizures in the left temporal region, same as her last EEG. Some stayed localized and some were spreading to generalized, although we didn't actually SEE any seizures during the test. They also saw slow spike waves, which officially got her diagnosed with Lennox Gaustat Syndrome. :( We are starting her on Banzel for this as soon as our pharmacy can get it ordered and compounded.

We don't get to UCLA Epilepsy Center until October 7th, so we are home and waiting anxiously. When we got home yesterday she was still a mess. Unable to hold her head up, or sit unsupported, and all she was doing was crying. Arching, stiffening, and whining. Looking back, I'm sure she was having small seizures all afternoon and evening. This morning she is sitting up unsupported and her head control is pretty decent. Thank goodness! We had orders that if she wasn't improved by this morning we were to take her back to the ER. In which case I was going to load us up and drive to UCLA ER just to get her in there quicker!

We have an ortho appointment today to do xrays of her hips and spine. Her hips seem to be bothering her a lot lately. We know she has mild hip dysplasia, so I'm nervous that it's gotten worse. And she has developed a slight curve in her spine, so we are getting a baseline xray to check for scoliosis.

This will be an interesting appointment, as ortho is notorious for making you wait 4 hours or so in the clinic! She is grumpy, not going to be happy to be back at the hospital, and unable to bear weight while standing. That will make for an interesting hip xray.

I will update more and post pictures, but I wanted to give a quick note!