Friday, March 16, 2012


This afternoon we had our EEG scheduled. An EEG is short for electroencephalogram. It is a test that measures and records the electrical activity of your brain. Special electrodes are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures can be seen by the changes in the normal pattern of the brain's electrical activity. In order to see abnormalities in the brain, the person needs to be asleep during the test.

We were doing this because 80% of children with Rett syndrome experience seizures. She hasn't had any grand mal seizures but they were curious if she was experiencing some that just made her daze off and not all there. The following is the story of how today went:

Let me start off by saying Oaklynn does not fall asleep ANYWHERE but her own crib and sometimes in the car. She wont even fall asleep in my parents pack and play anymore. Last night Oaklynn all of the sudden started having diarrhea and was up screaming for a few hours and I was changing diaper after diaper to keep it from sitting on her bum. I gave her Ibuprofen after a couple hours of screaming to hopefully dull the pain of her bum (which was BRIGHT RED). She was screaming even when she was peeing because it was just burning her bum so bad. She finally got to sleep around 11pm. She had a rough night and would cry in her sleep throughout the night. I was planning to wake her up early in the morning so she would be tired for the test this afternoon. After such a rough night, I didn't have the heart to wake her up so I just let her sleep until 8am, when she woke up on her own. The day was rough because she was in so much pain. I let her watch Mickey Mouse Clubhouse and Wonder Pets most of the day to keep her happy. Surprisingly she was starting to get tired even though she slept in.
Austin got home and we were worried about taking her to the test and thought about canceling because we were afraid that she would have diarrhea during the test and start screaming and it would just be a big mess. I told him we should just go and if we have to do it again, we have to do it again. On the way to the hospital Austin sat in the back seat to make sure Oaklynn stayed awake. She started dozing off so it's a good thing he was in the back seat with her. I had to drop him off at the entrance while I parked the car. We had to get her out of the car ASAP to try to keep her awake, that's how tired she was. We checked in and got called back right at 2:00 (our appointment time), what hospital gets you in on time?!? We went into a small room with a hospital bed and a chair. Because of Oaklynn's Apraxia (not being able to control her body), we had to mummy wrap her while putting the electrodes on. She didn't mind that at all. That normally wouldn't surprise me because she is so good but because she was tired, I thought she would have been upset. The lady used a giant Q-tip and cleaned certain spots on her head where the electrodes would go. She then place the electrodes on her head and Oaklynn didn't seem to mind that either. She then wrapped her head up in gauze to hold the electrodes in place. She didn't cry or fuss at all! In fact we were still getting smiles...
Once she had everything in place she turned the light off, lullaby music on and I held her on the bed and rocked her. Within 2 minutes of that the lady said, "she's asleep!". Austin and I looked at each other in amazement... we were SHOCKED that she had actually fallen asleep. I almost started crying because I was SO HAPPY that it was going so well so far. I did not want to have to come back and do it again. After 8 minutes of her being asleep the lady said, "I only need 2 more minutes and then we'll wake her up". We are shocked at how smoothly this was all going. After those 2 minutes I started trying to wake her up. We tried EVERYTHING. We turned on the lights, un-wrapped her, I un-zipped her clothes, put a cool washcloth on her face and body, sat her up and she did NOT want to wake up...
The lady grabbed a loud toy and started pushing buttons and she finally opened up her eyes. She started crying because she was not happy to be awake.
Once she opened her eyes, she started flashing a strobe light in her face. She wasn't too fond of that (and quite frankly, neither was I!). After the strobe light was over we had to get her to calm down and stop crying. She needed about 5 minutes of brain activity after the strobe light of her not crying and awake.

She then took the electrodes off and while she was doing that, Oaklynn went poop! Talk about perfect timing. We were so afraid it would happen during the test and it happened as we were finishing up!
As she was walking us out, she said, "Wait here and I'll grab something for Oaklynn." She went into a room and came out with a teddy bear and said, "You did SO GOOD, I wanted to give you a present." Oaklynn smiled at her (a small smile because she was still so tired) and held her teddy bear.
 She told us to call our Geneticist tomorrow and let her know the test is done. We got home around 4pm and at 4:30pm I got a phone call, I answered it and it was our Geneticist. She said she just got the results and wanted to read them to us. We were expecting to wait a couple days for the results, not a couple hours! She only read the exact report that the neurologist wrote. Couldn't really answer any questions for us because it's not what she specialized in. Told us to ask the neurologist any questions.

She said that Oaklynn's EEG showed a "tendency to having seizures" she said by that she is pretty certain that means she is having them. She said that there were frequent spikes in her brain waves and that her brain isn't functioning up to speed. The neurologist said she wanted to see us. We are going to go to this new neurologist now who read the EEG hoping that she will have more answers and be more insightful than our last one. We are waiting to get a call from her office to schedule the appointment. 

Medication isn't something we are sure we will give her. It all depends on how we feel about it after talking to the neurologist. It also depends on if it's something that could damage her brain if we don't do or if it wont matter. Since her seizures aren't bad, it's something we are debating. We'll make a decision after talking to the neurologist and praying about it.

Overall it went SO WELL. So much better than we could have ever planned and are happy Oaklynn did so good.

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