Rosalie is still not ‘right’. Friday – Tuesday she had multiple fairly severe seizures, including the ones that sent her to the ER twice and a three day stay afterwards. You can read about all that here.
She is on 3 anti-seizure medications and she had a few seizures yesterday (including one where she fell off the bed and hurt herself pretty good). Her sinus infection is probably the trigger for the seizures, as well as the antibiotics added to the antiseizure medications.
I have driven over two hours to the General Hospital (a teaching hospital with a certified Neurology specialty center) to be admitted for no less than 72 hours for a video EEG. They have a very well renown neurology department here. They are one of only 4 hospitals in Florida that can do neurological brain surgery (hopefully that won’t be needed…) They will slowly take Rosalie off the three anti-seizure medications she is on in order to evoke small seizures. Then they can pinpoint exactly where her seizures are coming from. Then they will use the EEG to help them assess which medications are more appropriate for her.
The neurologist thinks that her seizures are of 2 or possibly 3 types. Complex partial seizures (the staring spells), and alternating atonic and tonic seizures (grand mal are tonic/clonic seizures…she doesn’t have the clonic jerking). Tonic means LOTS of muscle contractions (stiffening) and atonic means LACK of muscle tone (hence the floppiness). But the video EEG will be able to tell us if those are the only types.
Please pray that
- They will be able to capture a very good representation of the types of seizures we are seeing. Yesterday as I was typing the preliminary email that began this blog post, Rosalie was curled up on the floor having a partial seizure and not able to respond to me. Typical. It only lasts 5 seconds or so, but when she got up she was very unsteady on her feet. This has been our life for the past few months, but it has gotten dramatically worse in October.
- That Rosalie’s brain would be protected during the seizures. I have already noticed quite a bit of memory loss and word re-call issues, but it’s been much worse this week.
- Pray for Andy and the kids to have a fabulous time without us.
We have arrived at the General Hospital. The EEG was put on at 2pm (11/5/10). I am very hopeful that we’re going to get answers. I have been visited by no less than 7 doctors so far! Fun fun fun! The room is HUGE, and there are 2 video cameras that are actually IN the ceiling (as well as audio recording device). I have found that it is easier to chat on gmail than to text from my phone. I don’t want to talk on the phone, because I am being RECORDED! That’s just odd.
The neurologists are taking Rosalie off the Depakote tonight. They will slowly wean her from the Lamictal and Trileptal part of the cocktail until we see all the different types of seizures. She has an iv lock in, but it’s just in case they have to give IV emergency meds. She’s not actually hooked to a pole with IV fluids or anything.
She is happy, sedate, and totally vegging in front of the tv. She’s watched MORE SPONGEBOB than ever. I hate Spongebob. They will sleep deprive her starting tomorrow if she doesn’t have any seizures tonight to kind of force a seizure. We’re here until they get SOMETHING on the monitors. That could be 72 hours, or a week. We’ll see.
Today, her cough sounds worse – like the gunk is finally being broken up and probably because she’s coughing all the gunk up. Unfortunately, she was so dehydrated they had to stick her twice, and she said with glistening eyes “no, no hurt me!”
Apparently the EEG is fairly comfy, because she hasn’t messed with it at all. When Rosalie has a seizure or staring spell or whatever, I am supposed to push an ‘event’ button. All the lights turn on full blast, there is an alarm that goes off and people come running in to assess her status post seizure. They told me that sometimes the alarm will go off all by themselves. Should be a fun night or two.
Right now, I have to tell you, Rosalie is having a great time! She is here laughing her head off watching Americas Funniest Videos. We painted our toenails pink and now we are just vegging.
Thank you Lord for the fun moments! This makes up for at least SOME of the angst of the last week. I am praying for fabulously clear results on this EEG. Amen and AMEN!
Wish us luck and pray for a miracle!