Yes, it is official, Leah does NOT have Narcolepsy.
Not that any of us are surprised by the news, we (family) never believed she did anyway. But it is nice to have it verified by the professionals.
We went for the follow up appointment on Wednesday with the Sleep Specialist - very nice man. Unfortunately we left him scratching his head because he can't figure out what this thing is either!
We go back to see him in three weeks for another follow up. He has offered us the option of starting Leah on Dexedrine - a half tablet in the morning and if no results add another half at lunch. The thought process is that it <might> help with her episodes of overwhelming tiredness, as Dexedrine is a stimulant and has proven very beneficial in patients with Narcolepsy. He is hoping if we could eliminate the symptom of overwhelming tiredness, maybe she would be able to stay at school and not come home so often. We haven't decided yet if we will start her on the meds. I need to do some more reading and weigh the pros and cons. I have the prescription if I decide to go ahead with it. He said if it was going to help we would notice a improvement quickly. I just need to see if the benefits would outweigh the side effects.
He was also going to do some research into a Functional MRI. In a nutshell, a regular MRI is to see the structural aspects of the brain, a Functional MRI allows you to see how the blood and enzymes affect the brain. He needs to do some research because he had a niggling thought in the back of his brain, that there have been some advances/research on the role of a functional MRI and Narcolepsy/Sleep disorders.
As for Leah herself, she has developed a prolonged case of the "blurries"- since an episode on Jan 16th, she has maintained a constant state of her head feeling blurry on the inside. Back in the spring when this all started, this had happened, and she stayed blurry for a over a month. Since then, the blurriness had occurred only during an episode and then faded shortly afterwards.
In addition, this past weekend, Leah began having trouble with her right eye. During an episode, Leah always says her right eye is bothering her, she rubs at it, tries to keep it closed, wipes at it etc. She can't explain what the issue is, only that it bothers her or feels weird. On Saturday, I noticed she continually placed her hand over her eye while reading me a story - she couldn't focus on the words unless she closed/blocked her right eye. This carried over to watching TV as well. It continued until Sunday when it resolved itself. We had her checked out by the eye doctor again who says her eye/vision is just fine.
We have reported both issues to the neurologist, but no advice/info for why it is happening has come back to us.
So, while it still isn't an answer, we can check Narcolepsy off the list.
On a side note...it feels like we have been fighting for answers for SO long, but in reality it has only been 8-9 months. In that time we have been to see a Paediatric Specialist, a Blood Specialist, a Muscle Specialist, a Neurologist, had a CT Scan, 2 EEGs, a EGG, worn a holter monitor, had a sleep study and a sleep latency study, had a MRI and genetic testing. Considering wait times in Ontario, she has had incredible access to medical resources!
I have to remind myself to continue looking on the bright side of things....it could be much worse!
I received that reminder on Wednesday shortly after our appointment. We had stopped by Ikea for a quick shopping trip. Waiting for the elevator, I was grumbling in my mind about the lack of a diagnosis, feeling sorry for myself about all the trips to Hamilton, all the worry and stress, feeling sorry for Leah for all the missed school and activities; the elevator doors opened and I saw a mother pushing her daughter in a wheelchair. Even though she had a hat on, you could tell the girl was bald, her colouring wasn't good, she had big dark circles under her eyes, she was bundled up to keep warm in the store and had a blanket lying across her lap. Cancer/leukemia immediately came to mind. My eyes connected with the mother and we shared a brief smile. I can not begin to imagine what struggles and heartache she feels; it certainly put mine into perspective. Yes it sucks that we are on this quest (it is now a quest in my mind, not a battle, or a struggle or anything else negative), it sucks that it has already impacted us as much as it has, but when I think about how bad it could be, I remember to count my blessings and not borrow trouble.
Friday 27 January 2012
Wednesday 11 January 2012
Happy New Year!
Happy New Year readers! Our family had a wonderful Christmas holidays and we hope you did too!
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
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".
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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