a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Sunday, November 27, 2011

The Wrong Way

In my previous life I taught first grade. I was insistent that my students only go down the slides on the playground. It was a simple rule made and enforced to keep my little darlings safe. You could guarantee I'd shoot the infamous teacher "stink eye" to any daring child who challenged my rule. And believe me, many did.

But, funny how time and circumstances change us. For a kiddo like Oia, climbing up a slide is a therapeutic challenge, practiced in PT sessions, and now suddenly acceptable in my mind. Even encouraged. My heart feels great delight to witness Oia tackling a slide the wrong way. She prefers the challenge of climbing up instead of sliding down which never ceases to amaze me. I never thought this would be a rule I'd gladly let my child break nor did I ever imagine that sometimes I actually have to remind myself that yes, this is a child with cerebral palsy... just look at her go.

Friday, November 18, 2011

An Update

A follow-up to the mystery mentioned in my last post...

We decided that the rule-out process was easiest to start at the idea that Oia was experiencing migraines and perhaps auras. So, to treat for migraines, Oia has been taking a quarter of an Amitriptyline pill each night. These pills act as a preventative to headaches. They are only about a frog's hair bigger than a birth control pill so quartering them with a pair of scissors isn't the easiest thing to do. Half the pill turns to dust and maybe the rest is usable, if you're lucky. We're going with it though... just following doctor's orders.

To date, Oia has not had any more inconsolable crying spells with any "off", discomfort-like behavior. However, she has gestured to the left side of her head and said "ou" as in "ouch" at least once every day since then. I have called the nurse at the neurologists office to discuss this with her. She said it still sounds like Oia is having headaches and suggested we up the Amitriptyline dose to half a pill and see if this dose eliminates the "ou" complaints. Last night was the first night of the new dosage and the first thing Oia said to me this morning was "ou" while holding her hand over the left side of her face. Is it eye related? Brain related? Hell I don't know, could it be a toothache? I'm grabbing at anything. It's still a mystery.

We have a follow-up with neurology scheduled in three weeks. We'll see where this road leads us at that time. There has been talk of scheduling an MRI and/or an EEG so we're playing limbo until this appointment. The last MRI Oia had was at the age of 7 months and the last EEG was in early '09 (I think). It may be time to get an updated baseline now that the Princess is 4.

In the meantime, my eyes are wide open. I'm constantly scanning her every move for a clue as I'm convinced this must be something. Maybe I'm making a mountain out of an anthill but it's always easier to be safe than sorry. She's our girl after all. But seeking the silver lining... Oia is still happy, busy, full of rotten, and the crying episodes have not returned. That has to be a good thing.

Monday, November 7, 2011

I Hate Gray

This is a bit overdue so let me rewind a little... to a week ago last Thursday.

I got a call from Oia's teacher around 11am. She tells me that Oia has been crying for some time now, is inconsolable, and demanding to be held. NEVER has my child been inconsolable. But sure enough, she was just that. My presence and early arrival to school didn't comfort her in the least. It panicked me. Her behavior seemed to be "off" as she was just not herself. Funny breathing, agitated, fatigued, and a cry I had never heard before. I knew I had to head to one of two places and fast. Either the ER or to her pediatrician.

I called Rob who happens to work at the hospital. I was going to pick him up so he could help me (I had both girls). We were at least 30 minutes away from where he worked. And in times like this, it's a blessing that my husband has a medical background. He gave Oia a quick assessment as soon as we picked him up. By this time, Oia has calmed down, and Rob determined it was safe enough that we could head to the peds office. Upon arrival at the peds office, Oia resumes the same crying behavior. They took us back right away. Oia screamed the whole time. Again, she was "off". She had no fever, tested negative for strep, and had no obvious reason for the discomfort. Gray is not my color. I'm a black and white girl who loves answers. We left with none. Just a dose of Tylenol. I wasn't satisfied.

Oia had another crying episode later that night, making a total of 3 for the day. She did get a slight fever later that evening but nothing too significant. I kept her home from school the following day so I could keep a close eye on her. She had me worried to death. The crying spells didn't return and it all seemed to be too strange. Fast forward exactly one week later...

Oia woke in the night with another crying episode. This time the crying lasted a solid hour. It was wrenching to experience. Rob and I both knew that whatever Oia was experiencing needed to be addressed with her neurologist. That's where we headed first thing the following morning. That was Friday.

Given our most accurate explanations of Oia's behavior during one of these episodes, it is believed by Oia's neurologist that she is experiencing some sort of neurological disturbance. The question is what? We know that Oia's EEG is abnormal. After all, we are talking about a girl with a hole in her brain. We know that she presents high risk for seizures. Was Oia experiencing a migraine, an aura, or a temporal lobe seizure of some sort? No one knows. And when no one knows, it's a toss up as what to do next and the "rule-out" process begins.

Migraines are the easiest place to start. Oia was prescribed a preventative medication to be taken once a night before bed. If there is no return of the crying behavior, then we can guess the medication is preventing a migraine and we can chalk that up as the answer. If another crying episode does return, we can assume that Oia is not experiencing a migraine, but instead something worse. In that case, we go back to the drawing board. If these episodes return and return with some frequency, then Oia will be admitted for monitoring in the hopes of catching one through an EEG to determine what it is and why it is happening.

It's a guess. I don't play these games well. Whatever it is, I wish Oia didn't have to endure it. She deals with enough. Maybe my 4 year old is experiencing an onset of migraines but my gut tells me it's more than that. I'm fearful of the 's' word and always have been. It scares the hell out of me. I'm living on eggshells and waiting. But for what? Nothing, I hope.

Your prayers are welcome here.