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!"

Thursday, April 02, 2009

Neurology update

Background: Long history of neurological "stuff" but nobody really knows what's going on, and once every couple of years we get some big scare, with the last one being 2 years ago. 

A few weeks ago (6 maybe?) Angela had a TIA while at horseback riding lessons. 

About 2 weeks ago, she woke me up at 3:00 a.m. holding her head and SOBBING because she had a headache. Ummm...Angela NEVER cries, much less SOBS..with real tears. It just doesn't happen unless she's gotten badly hurt. I don't remember the last time that happened. So, back to the headache...I got up, gave her some Tylenol, and she went back to bed. 

Later, just before my alarm went off to wake her up for school, , she came into my room with her head still hurting. I gave more Tylenol, canceled the bus and we went back to bed until 9:30 a.m. (unheard of for her.) 

Three days later this repeated. And it repeated a few more times, as it became more frequent, and is now ALMOST a daily occurance. The only difference is now...some of the headaches stay later in the morning, but they're usually gone by noon. HOWEVER, she's EXTREMELY irritable, and "on edge" all the time. We're also seeing some very odd behavior that is seizure like (and I just found out at her IEP meeting this morning that they've seen this at school as well and meant to call me about it but it happened the last day before spring break and was then forgotten.) 

We went in to see her ped. for her camp physical and I happened to mention the headaches, and asked if they could be related to her meds. 

I really hate when I "happen to mention" something, which snowballs into doctors saying things like, "Umm....headaches that wake you up in the middle of the night from a sound sleep are a serious concern." 

Which landed us in the neurologists office yesterday. What he's looking for now is pseudotomor, or nocturnal seizures. 

He sent us straight down for an MRI (still haven't heard back on that) and to the ped opthalmologist to have a look in her eyes since pseudotumor can put pressure on the optic nerve. 

If the MRI and ped. opth visit are clear, then we'll do an overnight EEG with video to check for nocturnal seizures. 

I asked if it's possible that it's caused by hormones, or her meds, or or or. The neuro pretty much said we have no way of knowing if they're caused by one of those things except by ruling out other things, or eliminating meds (not game for THAT right now!) 

But, he was quite concerned about the whole nocturnal thing and that they're waking her up . 

So her MRI was done yesterday, and I haven't heard back yet. I'm in the "no news is good news" camp. If she had something seriously wrong they would have called me by now. 

So thats the update for today.


Tamara said...

That tweet yesterday had me wondering. Thanks for the update. I sure hope all turns out well. Lots of prayers, Leah -

Kristen said...

Aw man, Leah. I pray that she is not having seizures!!! I look forward to the clear MRI.

Beverly said...

praying all is well for Angela!