This morning I was helping Blondie put her shoe on over her leg braces, when I thought I saw her left leg (we call it the "affected leg" in hemi lingo) shake. I barely saw it when it ended. After I put the shoe on she said, "here it goes again." Sure enough, it was shaking - the whole leg -it lasted about 20 - 30 seconds. Folks, my heart SANK. Was this a seizure? Were we joining the ranks of those debating a redo.... so many negative images ran through my head. Let's face it - as far as crummy diseases go, we have been absolutely blessed. Blondie has been the poster child for everything going right (for the most part).
I sent her to school, and talked to the office on the phone to give them a heads up, and tried to go through the day. Why in the world did I send her to school? Well.... if the leg shake is a seizure again it is something to LIVE with, not HIDE IN THE HOUSE with. Kids have seizures - she wasn't falling on the floor, her leg was shaking.... so go to school. Of course I also posted to the yahoo group for someone who may go through this periodically, and got a lot of reassurances that it could just be clonus.
Around 11 I got a call from school saying she had told them several times that it happened again. Now, I had already called the pediatrician and had an appt. for 3:00, but I called back and moved it up. I had also called two different neuro offices, but her current neuro office left me on hold for 30 minutes, and the former one hadn't seen her in 5 years, and getting past the chick at the desk was impossible. Thankfully our pediatrician called the local neuro, got us in, of course he would see us when he knew who was calling (kept trying to tell the chick on the phone that, but she was having no part of it), and so Wednesday we'll go in for an EEG. At some point next week we'll have an MRI. The words thrown around today were "Focal Motor Seizure" meaning one limb involved, and "Jacksonian Seizure" meaning it is possible to have a seizure and stay totally aware (as Blondie was this morning) which is really something I didn't want to know, as that was my secret weapon in deciding if something was a seizure or a weird twitch. It was also pointed out that since we've never seen clonus in 5.5 years then it might not be clonus. Crud.
So still firmly on this roller coaster ride, only now it stinks again. 5.5 years out Rasmussen's still smacks you in the face and reminds you that it thoroughly sucks! I'll let you know what we find out.
**Sorry for no pics - not feeling it tonight.**
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I am so sorry for the struggles you are experiencing right now. I understand the ups and downs and how difficult it can be. It seems to me you are a great Mom and it is easy to see why God chose you to be Blondie's Mom! He is always there for you!! {HUGS}
ReplyDeleteI don't know anything about the syndrome that your daughter has but what a little heroine you have there. :) I totally get the rollercoaster ride of special needs children since we adopted five.
ReplyDeleteYou left a comment about your garden on our blog (Life at Taylor Ridge). I responded below yours on our blog. We had the same problem. We resorted to Seven dust. Although my father tells me flour will work. I hope you figure it out. It's so frustrating to put in all the work and get nothing from the efforts. We replanted a few things more than once because it wasn't making it.
Take care,
Sharon in the Upstate of SC