Friday, June 27, 2008

Tonics

Today has been an absolute nightmare to be completely honest. Reagan woke up this morning fussy, but nothing unusual. She took a little nap and then woke up and really wasn't having too many seizures but then about 45min after waking up (10am) she had a tonic seizure. This was her worst one yet. It kind of caught me off guard because when she went into it she wasn't trembling the whole time like she's done in the past, she trembled for a few seconds but then was just completely stiff. And she had a horrible look on her face. Her eyes and mouth were open as wide as they could possibly open and her whole face was contorted and strained. It was terrible! And it lasted for much longer than usual about 5-6min total. When she came out of it she immediately went to sleep. I wasn't really sure what to do but I still had to take her in to get her blood checked, so I loaded her up into the car and drove to the hospital. My mother met me up there (she works a few buildings down) and we went to the pathology lab to have her blood drawn. She woke up on our way there and had some small seizures (typical of her waking up) but as we got to the lab around 11:30am she went into another big tonic seizure. That's 2 within 1.5hrs! We were going to take her to the epilepsy clinic but the nurses in the elevator insisted that we take her to the ER. The insane thing is that just this morning I was thinking about the fact that at least we've never had to take Reagan to the ER for her seizures. So we got to the ER and she was still in the middle of it so they took us in immediately to a room. She stopped shortly after and the next several hours we were there they essentially did nothing (but that's the thing with seizures...there's really nothing they can do). We never even saw a neurologist, they just spoke to them over the phone. They did check Reagan's levels of beta-hydroxybutyrate (for the diet) and said that it's down to 5...which is typically a very good level for seizure control. Obviously it's not working for her. The plan is to up her dosage of Clonazepam to 3x a day and talk to her doctor on Monday (he was gone at a conference) about what course of action to take next. We're going to keep her ratio at 2.5:1 until Monday and then the dietitian is going to tell us what to do to get her to a 2:1 ratio and begin weaning her off the diet. That's the plan. There's still a chance that as we wean her off we'll hit a ratio that will work for her, you just never know. I just pray that we don't see anymore of these tonic seizures this weekend (or ever). Please keep her in your prayers...


3 comments:

Heather said...

Oh, that sweet face Tera. You all have been on my mind, none stop, all day long. My prayer for you this weekend is peace. A peaceful heart till you speak to the doctor on Monday. A restful body for Reagan. Respite from these horrendous seizures.My heart is heavy but hopeful and I continue to be here for whatever you may need. Always.

Dawson said...

We continue to pray for Reagan and your family. Our hearts hurt for you, as we know how terrible the tonic seizures are to watch. We pray that you find something that works for your precious little one.
God Bless your little girl!!

jennifer said...

I'm sorry Tera. What a horrible day for you and Reagan. I hope the doctor's can fnd something to stop these awful seizures.