Monday, September 27, 2010

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!


erica said...

so glad you all are home! Are you on facebook? i would love to be able to talk with you!! My name is under erica rollins (erica knight). My emily sounds a lot like your. we have an appt on the 13th with neuro and we need to make some changes and I have some questions for you.

Junior said...

Goodness, Emily has been through a lot the past few days. Prayers that the seizures will stop and that you can get some answers. Give her a hug from us.

HennHouse said...

Wow. You have been through it lately... But those smiles... Thanks for posting those photos.

Praying for you all.

Debbie said...

Oh I am sorry for the past few days...the video is heartbreaking, for some reason I couldn't hear her though.

Sounds like all the same things I Hudson's hips, the spine...his posture is so bad we worry all this is inevitable as he always leans to his right!

Hope you catch up and YOU stay healthy!!!


I know weeks like this. Exhausting! Emily looks so would never know what this poor baby goes through.

Christy said...

I am so glad to see this update. I have to admit, I was getting worried. I really hope you can make it to the 7th with no more calls to 911.

Hang in there and know we're thinking of you!

Jenny said...

Oh I'm so relieved to hear something. I've been thinking about Emily nonstop the past few days wondering how she is. So, I'm glad to hear the news...and I love seeing that picture of her smiling! Isn't she beautiful? I mean, really. Watching that video, though is painful. What a sweetheart. It just breaks my heart. When Sammy's seizures were out of control and clustered, we were to give her Diastat after 5 minutes. We were administering it about every week to every other week. I started to see the pattern...I could tell if her seizures were going to get worse or not by the time 3 minutes came I'd usually prep her for it at around 3 minutes and then give it to her. Diastat was good because it would break the cycle. I had an ER doctor tell me once that even if one particular seizure isn't long, but she's going through the cluster and there's been seizure after seizure like that, I could just give her hte Diastat to break the cycle. She told me not to tell the neurologist that...but, ya know. But Sammy's seizures were generalized, grand mal, and her breathing got really really shallow. Maybe they were different than Emily's. Anyway...we've had a lot of experience with that very expensive drug, but it was helpful for us most of the time. I hope things start stabilizing for her soon. It's just too much for a little body to take. Love you!

Alison said...

So sorry to hear she is still having so many seizures. I really hope the new clinic can help.

Thinking of you all. said...

I'm so glad to hear from you! Emily has been on my mind non stop since your last post!

Those weird seizures she was having are so bizarre! I've never seen anything like them before!!
Poor Emily!!!

Hope they can get her Epilepsy under control real soon!

Praying for her xx

The VW's said...

Sorry that life has been so crazy for you lately! Praying that things calm down and cool down for you soon! Hang in there! Big hugs for you and Peanut!

Becky said...

SAD! I'm so sorry. Hope you get some answers soon. xo

Colleen said...

I'm so sorry that she has been having these seizures. Whew! What a roller coaster ride for you! I will continue to keep Peanut in my thoughts and prayers!

Zoey's mom said...

I so hate seizures.They are seriously the worst and to watch Emily or any child go through them is heartbreaking.Brings be back to our days in an instant.

Hoping crazy eases up a bit and you are able to breathe a bit.Mostly praying for Emily.She is justt so sweet.

*I am SO over this heat!Ridiculous!

Posh Totty said...

Awww bless you, you really have been through it lately, I am thinking of you all Xxx

Kate said...

I'm so sorry Emily is having so many struggles these days. I wish I knew the 'right' thing to say, but I don't. I'll just pray that her seizures can be brought under control & you can go back to your "normal" again.

niki.steeves said...

your little girl is beautiful! I stumbled acroos your blog through another friend. Im sure this is totally after the fact but my daughter had multiple kinds of seizures including hypsarrythmia(dx at a later age which is very unusual as they are also known as infnatile spasms) We finally became seizure free after working with Dr Chugani who is out of Michagan. Our insurance covered the out of state visit. he is known world wide for his work in pediatric neurology specializing in epilepsy. Just wanted to pass him name along. My daughter has been seizure free for over 2 yrs now and there was a time they said her only hope for a seizure free life was a hemispherectomy