Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, June 18, 2011

It's been a busy week!

When Dean makes a comment about the fact I haven't blogged in several days, then I know there's a problem! We've been pretty busy here this week, trying to get a start on summer and really not doing a very good job at it because there have already been too many interruptions! Well, that at the fact Axel's time outside is pretty limited right now. (more on that later.)

So the last two weeks of school Angela was having what we think were break-through seizures. I say "think" because Angela's seizures do not LOOK like seizures. She has complex-partial seizures that manifest with severe, unprovoked aggression. It is NOT behavioral. She can be sitting there fine, just chatting with her friends, when all of a sudden she grabs someone's hair, or hits (hair is the most common thing for her to grab) grabs someone and pulls them to the ground. She is usually unable to talk during these episodes. If she does, they are not complete words and she doesn't make sense. Usually it's just more sounds than words.

I had spent three years questioning weather or not she was having seizures, and the behavioral specialists at her school were saying, "This doesn't appear to be behavioral, we think it's neurologically based." We did several ambulatory EEG's but never picked up anything other than ONE tiny blip of "abnormal brain waves" but it didn't look like seizure activity. It happened to correlate with when she grabbed someone's hair. She wasn't finally diagnosed until she had an episode while we were sitting in the neurologists office one day. She'd been sitting there talking with us, when all of a sudden she lunged at me, wrapping her hands in my hair and dropping to the floor. The neurologist was able to see the entire episode and said, "THAT's what you've been dealing with? THAT is a seizure!" She was started on seizure meds that very day, and within three days we had our Angela back!!! Oh, how wonderful it was to have our happy Angela back!

So anyway, a couple weeks ago these episodes started again. We saw a couple at home, and there were a couple at school as well. They caught everyone off guard because we hadn't seen this stuff in so long! The neurologist ordered another ambulatory EEG, which I think is a big waste of time since we have never seen he seizures on an EEG, but...whatever.

Tuesday we went to get Angela all wired up. She LOVES doing this. I know..she's warped! She just loves the attention, and hey, if she can't have a halo like Axel, (because seriously, she wants one!) then wires are the next best thing!

Somehow I didn't get a picture of her when she was all done getting hooked up. The pack that the wires are plugged into gets put into a little backpack that she wears for 48 hours. Then a bandana over her head to cover up all the stuff. She loves the backpack, and knew before we arrived that she was going to choose the monkey backpack. LOL I tried to talk her into a more..umm..."teenager" backpack, but her mind was made up!

That first night at dinner, I looked across the table at this, and thought to myself, "Ok..umm...this is SO not normal!" Dean agreed.

It will take awhile for us to get the results of the EEG, but I don't expect it to show anything. Since we get enough stares with Axel in the halo, and I'm starting to loose my patience, I decided to skip going out in public for a couple of days with the two kids together. The worse part about the EEG is getting the glue and cement out of Angela's hair afterwards. But she was a good sport and didn't even complain this time.


Julie said...

You've probably already posted on this ... and probably try not to think about the answer too often ... but I'm wondering when Alex gets the halo off? Can't wait to see how your boy blossoms once he's "free" to play outside like a boy should!! He sure is a cutie! I love his crooked smile in this last picture!

Twilson9608 said...

It's amazing how seizures can be presented. I would have never guessed if I were to see what you are explaining. I hope that your able to get her on the right meds and have your girl back. I think its too funny that Angela wants a halo like Axel.

Difference2This1 said...

Hope you get some answers re. the seizures from this test.

I can see why you might skip going out for a bit :) LOL!

Wonder if we'll be doing something like this for Peter one of these days!! We get enough stares as people try to figure us out...I'm thinking all that stuff attached to him would add a few more :)