NOTE: This is an email I sent to friends and family several days ago when we were just at the beginning stage of Ellie's diagnosis. I am posting it here unchanged for journaling purposes.
October 1, 2010
Hello everyone,
Those of you who know me well, know that I am a writer. Not that I'm very good at it or anything, but it's always been an outlet for me. It is my hope that by sharing these regular updates and photos with you, that I will keep friends and family up with Ellie's happenings, and in process also preserve, for posterity, this journey we're embarking on. If you prefer not to receive these updates in the future, although I don't think they'll be too often, please let me know.
Take care,
Lara
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Since Ellie started having her absence (it's pronounced "ab-SAWNS") seizures a week and half ago, she's been having them several times a day, mostly clustered in the afternoon and evening when she's tired. Sometimes she just stares blankly. Other times her eyes roll to the side slightly and her eyelids flutter. Other times she absently and clumsily continues in a motion (this is the one that scares us the most). The one thing that stays the same though, is that she's completely unresponsive. You can yell her name, touch her, wave your hand in front of her face, and still nothing registers on her face. She doesn't look at you, her expression doesn't change, she stops talking mid-sentence. It's disconcerting and we're quite anxious to get to the bottom of it.
The first part of discovering the diagnosis, was this preliminary EEG to find out what's going on in her brain when she's having her seizures. It's all a bit over my head (forgive the pun), but depending on the wavelengths and where they originate in the brain, it is very informative at determining what kinds of seizures these are and what her long-term prognosis MAY be. The doctor instructed us to have her get 3-hours fewer sleep, so that she would be sleepy (and more likely to have seizures) during the test, so we (Cami and I) kept her up until 11:30 by letting her watch “Anastasia” on my laptop while we all snuggled up in Cami’s bed.
Those of you who know me well, know that I am a writer. Not that I'm very good at it or anything, but it's always been an outlet for me. It is my hope that by sharing these regular updates and photos with you, that I will keep friends and family up with Ellie's happenings, and in process also preserve, for posterity, this journey we're embarking on. If you prefer not to receive these updates in the future, although I don't think they'll be too often, please let me know.
Take care,
Lara
****************************************************
Since Ellie started having her absence (it's pronounced "ab-SAWNS") seizures a week and half ago, she's been having them several times a day, mostly clustered in the afternoon and evening when she's tired. Sometimes she just stares blankly. Other times her eyes roll to the side slightly and her eyelids flutter. Other times she absently and clumsily continues in a motion (this is the one that scares us the most). The one thing that stays the same though, is that she's completely unresponsive. You can yell her name, touch her, wave your hand in front of her face, and still nothing registers on her face. She doesn't look at you, her expression doesn't change, she stops talking mid-sentence. It's disconcerting and we're quite anxious to get to the bottom of it.
The first part of discovering the diagnosis, was this preliminary EEG to find out what's going on in her brain when she's having her seizures. It's all a bit over my head (forgive the pun), but depending on the wavelengths and where they originate in the brain, it is very informative at determining what kinds of seizures these are and what her long-term prognosis MAY be. The doctor instructed us to have her get 3-hours fewer sleep, so that she would be sleepy (and more likely to have seizures) during the test, so we (Cami and I) kept her up until 11:30 by letting her watch “Anastasia” on my laptop while we all snuggled up in Cami’s bed.
(FYI--Glen had to get up at 5:00 to take Spencer to seminary AND he’s doing a triathlon tomorrow, so he was excused from the late-night entertainment).
Then we dragged Ellie out of bed at 6:30 this morning. She was a little slow getting moving for the day, but she ended up being a complete trouper by remaining in happy and energetic spirits through the day.
Her appointment time was at 2:30 this afternoon and we were instructed to give her a dose of Benadryl at 2:15 to make her really tired for the appointment. I was quite worried about her falling asleep in the 30 minute car ride to the neurologist office, but a little Princess and the Pauper on the DVD player kept her alert the whole way.
The hour long wait in the neurologist’s office was another story though. We read books, looked through all the non-kid magazines and picked out yummy looking food we wanted to eat, we marched around the office, we colored, but she REALLY struggled to stay awake at this point. Finally they finished up with the girl who screamed most of the way through her EEG (hence the long waiting time) and it was time for Ellie’s turn.
We had prepared Ellie by talking about the procedure and showing her pictures of the wires and such, but in the end I don’t think Ellie cared much about anything except about getting to lay down on the bed in the room. She was completely compliant and quiet while they attached the dozens of wires and I think the technician was relieved to have an easy-going child after the super high maintenance child right before her.
The hour long wait in the neurologist’s office was another story though. We read books, looked through all the non-kid magazines and picked out yummy looking food we wanted to eat, we marched around the office, we colored, but she REALLY struggled to stay awake at this point. Finally they finished up with the girl who screamed most of the way through her EEG (hence the long waiting time) and it was time for Ellie’s turn.
We had prepared Ellie by talking about the procedure and showing her pictures of the wires and such, but in the end I don’t think Ellie cared much about anything except about getting to lay down on the bed in the room. She was completely compliant and quiet while they attached the dozens of wires and I think the technician was relieved to have an easy-going child after the super high maintenance child right before her.
While lying there on the bed, it took every effort to keep her awake until all the wires were attached. She had a couple of visible seizures while Renae (the technician) was working on her. I’m used to being the only one who notices the “episodes” most of the time, so it was interesting to see how tuned into them Renae was. She even noticed them before I did a couple of times.
It was my biggest worry through all this that she wouldn’t have any seizures at all for them to see or measure and that we’d be left hanging with an uncertain diagnosis, so I was relieved (I know it sounds weird) when she had three during the half-hour long EEG.
It was my biggest worry through all this that she wouldn’t have any seizures at all for them to see or measure and that we’d be left hanging with an uncertain diagnosis, so I was relieved (I know it sounds weird) when she had three during the half-hour long EEG.
She was sound asleep in about 2 minutes after the test started and she ended up having two of the seizures in her sleep. We won’t know anything more about the results until after the neurologist evaluates them, which could be 1-2 weeks. At this point, though, I am happy that the EEG was able to get some good readings that will help them with our diagnosis. (NOTE: The EEG results confirmed that she was having petit mal [absence] seizures)
Right now her MRI is scheduled for October 27. (NOTE: She already had the MRI last week and the results were normal). We were a little frustrated with the long wait, but we’re hoping the doctor will try to use some pull to get it moved up, if possible. When I got online to find out if that kind of wait is normal, I did learn that with socialized medicine in the UK that it usually takes 18-22 weeks to get into a neurologist appointment with new seizures and another several weeks for an MRI. I pray that health care in the US is not going down that path.... (sorry for the political view thrown in there)
Thank you for your prayers in our behalf. I oscillate between between calm and optimistic about everything and worried sick about what the future may hold for Ellie. Best case, she still has the MRI, more EEG’s, and medicines to take for several years at least. Worst case.... I don’t really want to talk about that. (NOTE: We're relieved that we don't have to worry about worst case anymore.)
Right now her MRI is scheduled for October 27. (NOTE: She already had the MRI last week and the results were normal). We were a little frustrated with the long wait, but we’re hoping the doctor will try to use some pull to get it moved up, if possible. When I got online to find out if that kind of wait is normal, I did learn that with socialized medicine in the UK that it usually takes 18-22 weeks to get into a neurologist appointment with new seizures and another several weeks for an MRI. I pray that health care in the US is not going down that path.... (sorry for the political view thrown in there)
Thank you for your prayers in our behalf. I oscillate between between calm and optimistic about everything and worried sick about what the future may hold for Ellie. Best case, she still has the MRI, more EEG’s, and medicines to take for several years at least. Worst case.... I don’t really want to talk about that. (NOTE: We're relieved that we don't have to worry about worst case anymore.)
Love you all!
Lara
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I hope I'm not boring you with all my Ellie posts. It's such a big part of our lives right now though, that it's hard not to. Hopefully in the next few weeks we can get back to more non-epilepsy related posts here.
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I really appreciate the update Lara. Keep em coming!
ReplyDeleteI'm so glad your posting all about Ellie, We are so far away and it's always great to hear how everyone is doing in VA. But especially since hearing about little Ellie, I've been worried about her and you guys, so I'm very glad you keep posting.
ReplyDelete