Well, we have had a few more of the complex partial seizures than normal. She may have 3-4 a month, but this week, she's had seven in the last four days. I spoke with Dr. Neuro today and he decided to up her dosage of Topamax. He said that if we didn't see a reduction in her seizures by Monday, that he wanted to move up her vEEG and possibly change her meds. We discussed putting her back on Keppra, since we had great luck with it before the onset of the IS. We were so confident that the spasms were not going to return, but two hours later, I took some video of Kaylee.
I just stared at her, completely frozen when it first began, even though the camera was right in front of me. I was in such shock and disbelief, that I guess it just didn't process right away. She was making these movements for a good two minutes before I started filming and they occurred every two to ten seconds. The whole top half of her body would stiffen up. Please comment and tell me what you think. I will be calling the doctor tomorrow.
I'm trying not to get too upset about it yet, because I have only caught it once. She's definitely been making some weird movements lately, but we have been so busy this week, I haven't had a chance to just stare at her to see a pattern. My gut tells me that this isn't good, but I want to see a pattern before I start to worry. We know that even if it is, ACTH is not an option for us. It didn't agree with her the first time, so we will definitely be headed toward Vig. I actually already have the referral letter to a doctor in Mexico just in case the Topamax didn't curb the spasms when the ACTH didn't work the first time around. We'll see what happens tomorrow. Please pray that I am wrong...
6 comments:
I REALLY hope it's not what we all think it is! Don't hesitate, get the EEG. Keep us posted and we'll be sending anti-spasms thoughts Kay's way!
this is one of those times when you really want to be wrong. I'm completely numb right now. We have had so much bad news in the past week, I wasn't ready for more. My grandfather's cancer is back and has spread, Mark's Grandmother is in ICU and may not survive, Kay's seizure increase, now possible IS return, my stupid head wound and I also think I have bone spurs on my foot. I have so many knots in my neck I can barely move it! I think I have a knot for every bad thing that's happenend!
Just praying things won't get worse. Trying to look on the sunny side, but it's hard to see it through this fog.
wow, i don't even know what to say....i don't have experience in this area, so can't say whether it's what u suspect or not....but i can't imagine how it must feel wondering if the IS is back! and all the other stuff u have going on too?! gosh shanna - (((((((Super huge hugs)))))))) i'm praying for u guys! please keep us posted
xoxox,
sharon
u and danielle r both soooooo strong - u're my heros!!!
OH Shanna! Yesterday was a butt kicker day for me & I didn't get to check your blog until this morning. And I'm SO tempted to call you right now! But it's way too early your time!
After what's going on with Trevor I watch the video & think it's look VERY suspicious. Especially because I know there is difference between being there...and what's caught on video. I think you should push for the VEEG now. I hope he has you first thing on Monday.
On a better note...it appears to only affect her right side. Much like Trevy. It's manifesting like a complex partial. And from what I've been reading on Vig...that is the best drug for complex partials & TSC! I'm praying my heart out for you...Kay...and Trevy!
((((((hugs)))))))))
...danielle
Thanks! Big hugs to all of you!
It was great talking to you this morning, Danielle, as always. So crazy that this happened right around the same time again. I didn't think they would every return. I really thought we were in the clear. Just hoping the drugs will keep the seizures at bay. They have been doing well so far with the dosage increase.
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