Paul and I both had the Christmas week off work and we were able to spend a whole lot of family time together - something that our work schedules don't usually allow.
Leah only had two episodes over the holidays, they were both during times she was in a warm, busy, loud environment. We thought we had the pattern figured out based on the last 4 episodes....then she had one today. And of course, today was different and threw my theories out the window.
Our middle daughter Hannah gave the family a night at the movies as a Christmas present, and we were finally able to go en masse to see Alvin and the Chipmunks - Chipwrecked. Leah was loving the movie, she was happily gobbling popcorn, sipping some sprite and giggling away. I was feeling confident that we would have an uneventful time - the theatre was not overly crowded, the temperature was a little on the low side, the sound as always was loud but not painfully so. Then slowly, slowly, she started leaning into me, then laying against me, then on my lap, then draped across me in her boneless way. Feeling smug and secure in my understanding of her pattern (at this point she is ALWAYS extremely cold) , I grabbed a coat to bundle around her - and she responded by complaining she was too hot and took off her sweater! Well darn it! What the heck is going on now? She told me she was dizzy but not blurry, her right eye was "bugging" her and she was tired. When the movie was over, we carried her out to the van and she was in bed as soon as we got home. When I was tucking her in she told me her head was starting to get blurry and she just really wanted to sleep, she was very groggy, her voice was wispy and she was having a hard time maintaining her side of the conversation. My poor baby.
On the positive news side of things, we have a date for her sleep study and the requisition for her genetic testing and Lyme disease bloodwork. Leah and I are to present ourselves at 9pm on Monday January 16th, at the sleep clinic at St. Joesph's Hospital.. She will hooked up to all manner of monitoring devices and then asked to sleep normally - seems a little contradictory to me, but I guess they still get results. Then in the morning she remains hooked up, but can be mobile. We will remain in a dimly lit environment, with little to no stimulation. Leah will be asked to take a nap every 2 hours - they will only let her stay asleep for a maximum of 20mins each time. They will do this 4 or 5 times through out the day. We should be on our way home by 5pm on the 17th. These results along with the genetic bloodwork (which takes 3 months to get results) will either prove or disprove the working theory of Narcolepsy.
We now also have another symptom to add to our list - Periodental Abscesses. Leah had another one over the holidays and true to form it occurred over the New Year's long weekend when access to her dentist and/paediatrican was impossible. We got her on antibiotics as soon as we could and got her to her dentist first thing on Tuesday morning but it was too late, they had to remove the tooth where the abscess was located. They do this for a number of reasons
- in order to clean out the abscess
- to ensure it does not spread to other sockets
- to ensure it does not damage the adult tooth underneath
- to ensure it does not spead into the blood stream or the jaw bone
If you add the abscesses to her symptom list, a new syndrome pops up - Ehlers-Danlos Syndrome. This actually may make sense if enough reading is done and the family history on my side is taken into account. And of course if you take a good look at this picture! :) At the very least it gives us another direction to search in.
She does this without even thinking, with no effort, no pain...just sitting around colouring, or as she says "just getting into a comfortable position Mom".
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