I've spent the past 3 days in the EMU at CHOP with my daughter while she was having a long-term VEEG. Annika had 3 big seizures and 1 smaller one yesterday and overnight, all with a left temporal lobe focus. It has been an ordeal - she desatted dramatically during her seizures last night (her Oxygen level went down to 14!!), and today she was extremely nauseous and vomiting all day. After a couple of doses of zofran she's feeling much better now, but we are staying one more night. As long as nothing happens (prayers please!) we'll be home in our beds snuggling our dog tomorrow.
We have a new plan since she's been having daily partials and occasional tonic-clonics while on 50mg/day of Onfi (that's a LOT!). We are staying on the Onfi for now, but starting Vimpat tonight. We should be at a therapeutic dose of Vimpat in a week; after that, depending on how things go seizure-wise, we will look at beginning to wean the Onfi. In addition, we are continuing the process of evaluating for surgery - that takes 6-8 months anyway so we might as well keep moving forward in case these next meds don't do the trick.
Interestingly, if you have been following our story at all (See http://www.coping-with-epilepsy.com/forums/f23/auras-veeg-24280/) she had a bunch of strong simple partials on her first day here - and once again, nothing on the EEG. After rounds I was very discouraged, since the docs seemed to be thinking (once again) that she was having anxiety or panic rather than seizures. Well, low and behold when she has an aura before it spreads to a complex partial/tonic-clonic seizure, that aura doesn't show up either, even though once it's a complex partial the EEG goes crazy. So her auras/simple partials are either too localized or too deep to be picked up on an EEG. It's good to be vindicated, but it drives me crazy that I had to keep advocating that this was the case over and over and over again!
Lesson is - don't give up!! And thank you everyone for your support. I feel good about our plan and hopefully we will be on a positive path going forward. God knows she deserves it!
We have a new plan since she's been having daily partials and occasional tonic-clonics while on 50mg/day of Onfi (that's a LOT!). We are staying on the Onfi for now, but starting Vimpat tonight. We should be at a therapeutic dose of Vimpat in a week; after that, depending on how things go seizure-wise, we will look at beginning to wean the Onfi. In addition, we are continuing the process of evaluating for surgery - that takes 6-8 months anyway so we might as well keep moving forward in case these next meds don't do the trick.
Interestingly, if you have been following our story at all (See http://www.coping-with-epilepsy.com/forums/f23/auras-veeg-24280/) she had a bunch of strong simple partials on her first day here - and once again, nothing on the EEG. After rounds I was very discouraged, since the docs seemed to be thinking (once again) that she was having anxiety or panic rather than seizures. Well, low and behold when she has an aura before it spreads to a complex partial/tonic-clonic seizure, that aura doesn't show up either, even though once it's a complex partial the EEG goes crazy. So her auras/simple partials are either too localized or too deep to be picked up on an EEG. It's good to be vindicated, but it drives me crazy that I had to keep advocating that this was the case over and over and over again!
Lesson is - don't give up!! And thank you everyone for your support. I feel good about our plan and hopefully we will be on a positive path going forward. God knows she deserves it!
