Warning: Long Post
So as many of you know, the end of November 2009 we started to notice that Zoe was sleeping a lot more than usual. So we took her to our Dr. and he checked her thyroid and said she needed to be on meds for it. So she started them the middle part of December. The first day she took them she fell asleep in class for a hour and a half, we went and picked her up and immediately called our Dr. to see if this was normal. He agreed that it was not and ordered a MRI for the next morning. We were scared, we knew something was wrong but just didn't know at this point what we would find. Luckily, the MRI came back clean. The Dr. told us just to continue the meds for a couple of more weeks and see what happened. Well, we did and saw no improvement.
On January 6th we went back to the Dr., now by this time Zoe was sleeping up to 16-18 hours a day and started to fall, we always had to hold her hand because she would just go down without any warning. And her behavior was out of control, she went from being this sweet little girl to completely out of control. We were telling the Dr. everything and Zoe couldn't even stay awake for the appt., we took pictures in of her that we had taken in mid November and a picture that we had taken exactly a week later, she didn't even look like the same little girl, that spark in her eye was gone! This appointment was extremely emotional for Justin and myself. Our Dr. told us he needed to make a few calls and would be right back. He came into the room and let us know that he had been talking to a Neurologist and that we needed to take Zoe to be admitted to the Hospital immediately. We were both so scared, but trying not to show it to Zoe.
The pictures above are when she was in the hospital, while there she had to have, 2 EEG's, and a Spinal Tap! She was such a little trooper. But her behavior was horrible, the nurses asked if she always acted like that. Well, everything came back clean. The Dr. came in and examined her and saw how out of control her behavior was. He told us then that he thought she had Narcolepsy, but she needed further testing to be sure. Now the crazy thing about this is that back in December between Christmas and New Year's Paula was here and we were talking about Zoe and said "wouldn't it be crazy if she had Narcolepsy?" We never thought we would be right.
So then we were referred to a Dr. at Primary Children's Hospital. We loved him, he was wonderful and took such an interest in Zoe. He got a sleep study scheduled for her in February 2010 and those are the pictures of her below. He wanted to confirm his diagnosis of Narcolepsy with not only the sleep study but ANOTHER spinal tap. So back to EIRMC we went for the second spinal tap. When they give someone a spinal tap they give them a medication that relaxes them, but with Zoe this medicine has the opposite affect. She had to take 2 doses of it and still never fell asleep, so she was awake for it! She's such a strong and brave little girl. Her spinal fluid was sent to Stanford University to test her Hypocritin levels. Hypocritin is what tells your body to stay awake, we later found out that Zoe's is so low it's almost non-existent.
Now after all that I'll tell you her final diagnosis is: Narcolepsy/Cataplexy. Narcolepsy means she is constantly fighting sleep and Cataplexy is when she is overcome with a strong emotion in her case laughter, her muscles paralyze for a second and she falls to the floor and actually goes into REM sleep for a split second. When Zoe has a Cataplexy attack it is heart-breaking. Her only sense that works when she has an attack is hearing. If you try and talk to her, her words are slurred and you can't understand her. It usually takes her anywhere from a minute to two minutes to come out of one.
We have been blessed to have such good Dr.'s to help find out what was wrong with our little ZoBug. We have had a lot of people say how sorry they are, but our response is this, it could have been a lot worse. She could have been diagnosed with something that could not be treated, even though this is something Zoe will never grow out of, it CAN be treated with the right meds.!
This has been a huge adjustment for our family. Trin is Zoe's little protector, she knows when Zoe is about to fall and helps her down to the floor very gently. A few months ago, out of nowhere Trin said "Mom, I miss Zoe's laugh." It's been so hard for Trin and Zoe not to be able to goof around, laugh, and play with each other like they use to.
We feel like now we are on the right track with her meds and are just starting to see our "old" Zoe, the little sparkle in her eyes is starting to make it's way back. We are hoping to start having some well deserved fun with our little girlies really soon!
