May 18, 2012


This has been a rough week. It began with SB having an EEG on Monday. For this, she needed to be sleep deprived. We had to keep her up late Sunday night and wake her very early on Monday. Then keep her awake until the test.

My anxiety level for this procedure was off the charts. When SB is overtired, she often becomes manic. For the test, she would need to be still on a hospital bed for 60-90 minutes. I did not expect this to go well. But, my big girl took it all in stride.

First, she got comfortable on the bed with some special things we'd brought from home:
Then the nurse applied the electrodes to her head. She looks a little apprehensive in this shot, but did quite well:
Shortly after that, the test got underway. The nurse turned down the lights and turned on a sound machine. She attempted to get SB to hyperventilate by having her blow rapidly on a pinwheel for three minutes. Next she used a strobe light that started flashing slowly and got faster and faster.

Then she left SB alone, and SB fell into a deep sleep. Which is what they hope for. I was sitting in a chair beside the bed watching her. The nurse sat at her computer, staring at the screen and periodically typing on her keyboard.

When the test was over, SB did not want to wake up. We had a very difficult time rousing her. She was particularly unhappy when the lights were turned on:
Can't blame her one bit. After it was all over, I rewarded her with a chocolate milkshake and some french fries:
That night, she slept 13.5 hours. But it was not enough to make up for the sleep deprivation. The manic child I had expected to see on Monday decided to make an appearance when we returned to the hospital to see the neurologist Tuesday. Fortunately, hubby had the the day off and went with us.

The appointment with the neurologist was basically a lengthy interview. She gave SB a quick neurological exam, but spent most of the time asking questions. Primarily of me, since hubby did not witness SB's seizure. But she also wanted to know about our medical histories.

We brought up the "staring" episodes SB has that we have both witnessed. Before last month, we didn't think it was anything more than a kid zoning out. Normal stuff. Her seizure last month changed our perspective.

The neurologist believes SB had a complex partial seizure last month, not a grand mal. And she is concerned the staring spells could be absence seizures. (One of SB's preschool teachers has a niece who has absence seizures. She believes she has witnessed SB having at least one at school.) 

The EEG SB had this week was normal, so the neurologist wants to do further testing. First of all, she wants an MRI of SB's brain. For which SB will need to be sedated. Then she recommended a 24 hour EEG. This would involve SB and I staying in the hospital for 24 hours straight. And, SB would have to remain in bed the entire time.

I seriously wanted to ask the woman at that point if she ever actually works with small children. As high as my anxiety level was for a brief test, I'm not sure I would survive a 24 hour one. Hubby's was experiencing anxiety over the potential cost, as we have a high deductible insurance plan.

We decided instead to do an eight hour video EEG. SB will again have to be sleep deprived, and we will hope, strange as that may seem, she has some type of seizure activity so they can capture it.

The MRI is not scheduled until July 25. I will be contacted shortly to set up the EEG. In the meantime, we are to operate under the assumption more seizures will occur. This is also what we were told by the ER doctor and SB's pediatrician. We have been given a list of specific precautions to take. But for the most part, life will continue as normal.

While we don't know exactly what is going on with SB and it is too early for a diagnosis or prognosis, the neurologist gave us some general statistics. Once a child has had a seizure, there is a 30-40% chance she will have another. After a second seizure, the potential for more to occur is 70%. And after a third event, there is a 90% probability they will continue.

If SB has been having absence seizures in addition to the one partial complex, we're looking at a very high probability this is epilepsy. Are there worse things? Yes. Of course there are. Does that make it any less scary that there might be something wrong with my child? Absolutely not.

This sucks.

I am normally an optimist by nature. But I have this feeling of dread deep inside me I cannot shake. My stress level is so high it is making me physically ill. I keep having an internal dialogue, trying to calm myself down. It's not working. The question of "What If?" is much bigger now.

At completely random and inconvenient times this week, I have started crying. I just want to get this all over with an know what is going on with my sweet child. They say "with knowledge comes power." And I do believe if we can obtain some concrete information, we will be able to address the situation and I'll feel better about it all.

It's the not knowing that is really hard...

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