Tuesday, October 5, 2010

Ellie

(I'm transferring this post over from my other blog...if you want to read the comments go there.)

In answer to your questions: 

  • Ellie is having her MRI on Thursday, which was a direct answer to our prayers.  They'd originally scheduled it for October 27 and we hated having to worry for that long.    Because of her young age (and propensity for wiggling), the MRI has to be done under sedation at the hospital.  Her safety during the procedure is now the focus of our prayers. 
  • Based on the kinds of seizures that she's having (petit mal) and the lack of other symptoms, the neurologist does not expect there to be any abnormalities with the MRI, but just wants to make sure. 
  • Ellie has 15-20 noticeable seizures a day and the only way they are noticeable is if I'm in the same room with her and/or interacting with her.  The doctor estimates that she's having dozens upon dozens more each day that go unnoticed. Unless you were interacting directly with her, you may not ever notice one of her seizures, but all those seizures in a day in 10-15 second increments sure make for a lot of missed cognizance in a day for her.         
  • Ellie is back to school this week.  The school is holding a seizure training session with all of the teachers that Ellie comes in contact with during a day.   They will be trained on how to notice the seizures and how to redirect her when she regains consciousness.  They will also be trained on what to do if she ever has a grand mal seizure, which although somewhat unlikely still, is more likely now that she officially has epilepsy.  
  • Ellie has no idea why she's going through all this.  She thinks that a seizure has something to do with the little cough she had last week.  We have no idea how to tell her any more than that. 
  • If Ellie is walking when a seizure occurs, she sometimes  clumsily and absently keeps walking, although she's totally unresponsive and unaware of her surroundings.  I'm very worried about her playing in high places (like the play equipment at school), but so sad to have to ostracize her in that way. 
  • It's looking more and more like she has Childhood Absence Epilepsy, which is considered among the most mild and treatable forms of epilepsy.  Children often outgrow it in adolescence, although having epilepsy at all makes her much more prone to other forms of epilepsy later in life. 
  • The doctor has prescribed a medicine for her, which she will start taking twice a day in very small doses.  We're a little on the anti-medicine way of thinking, but feel strongly that for Ellie's quality of life we need to be diligent with it.  It is our hope that side effects will be nonexistent or minimal.
  • Your kind comments and prayers are very much appreciated.  :)


  • Totally off topic, but, yes, I'm doing strange things with this blog (hence all the missing posts).  All will be revealed shortly. 



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