Catching up

I feel like it's been for-ev-er since I was caught up here! Emily ended up back in the hospital Friday morning. She woke up fine, and then started having some weird seizures we'd never seen before. She was gagging and retching and vomitting. She would scream and then stop, her eyes would roll up in her head, and then she would scream. Over and over. It was miserable. After about 15 minutes of doing this off and on she stopped, so we walked down to Jacob's school. He goes off to class and her bus picks her up there. While waiting for the bus, she started seizing again. We ran home and she kept doing it. By this time it was about 30 minutes since she had started, and so I gave Diastat.


We called 911, and the ambulance came. They took us back to the local hospital, where Emily woke up and was her normal self. They didn't feel comfortable discharging us since we had just started the Banzel and obviously don't have seizure control. They transported us by ambulance back to Children's Hospital where we spent the night again. The neurologist came in and said that we can change our Diastat protocal finally. If she seizures for 3 solid minutes, or clusters for more than 5 minutes, we are to give Diastat. If she continues to seize, we are to wait 15 minutes and then give another dose of Diastat while calling 911. We don't have to call after the first dose of Diastat unless her breathing gets funky.

We stopped the Banzel and started her on Mysoline. This is a derivative of phenobarbital. It's not an ideal drug, but they're just hoping it will control the grand mal seizures and clusters. They told me it might even cause more absence seizures than normal. They just want her to be stable at home until Oct 7th when we go to UCLA.

Today she had a GI appointment, and they want her to gain weight. She is a skinny little thing, and her BMI is just barely 10%. We are also upping her Nortriptaline to see if it will help her retching a bit more.

We saw ortho one day last week, in between hospital trips. Her hip dysplasia is the same as before, so we don't have to go back for a whole year to check on it! Her spine has developed a very slight scoliosis curve so we will monitor that as well.

Phew. I am tired. School has just started and as PTO President there is so much to get done. I am very lucky to have some amazing friends who have helped out at school and with taking care of Jacob in the afternoons for me. That's the update. It is hot as heck here, almost 100 degrees. Emily has had small seizures all day, but not clustered together. We have her in just a diaper under the ceiling fan. Heat + epilepsy = a seizing peanut.

I hope everyone is doing well. I feel so behind on everyone's lives, I need to get caught up!