Thursday, October 7, 2010

Just Normal Kid Stuff

As a parent with a child who has a medical condition, it seems like we never get the opportunity to just sit, relax and just watch our children. There is always some sort of scrutiny and or assessment going on when I watch her play. Was that a seizure, are her meltdowns a side effect of the medication, can I call her change in play progression in her development, and so on and on. I feel like I am always on a heightened sense of alertness with her.

Dr Khan, one of our neurologists, thought it was amazing how well I can spot her seizures. We went in for a 72 hour EEG. Along with the leads on her head, the entire test is video recorded (always fun trying to sleep under the watchful eye). He would see me play with her on the bed and then I would push the seizure button. He visually could not see the seizures but the EEG patterns picked it up. I am just so used to spotting them.

So, the past week or so, Meghan has been cranky, not wanting to eat, screechy, completely unhappy and unsettled. So I analyze and compare her symptoms to what I think could be going on. And it goes something like this:

Meghan's Symptoms:
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Waking up through the night (ugh)

My Diagnoses's (yes...plural):
Steroid Withdrawal
Vimpat Withdrawal
Adjusting to the Felbatol...still
Maybe showing an allergic reaction to the Felbatol

A Tooth!!!

Not just a tooth but a 2-year molar. I had to laugh. Something so normal and I completely missed it. Hello...wouldn't that be anybody's first guess!! I guess it just goes to show that with a child who has a medical condition, sometimes the normal is so abnormal for us parents.


  1. That's too funny. We too have a hard time deciphering what's normal baby development and what's related to Gracie's disorder. I think more times then not we relate everything to seizure activity.

  2. Oh it's so true Brien!! We literally become experts where we never thought we would! Gracie is looking so good though. I love how alert she is!!!

  3. I hope she cuts her tooth quickly poor baby. No fun.

    You are a very strong woman bless your heart for all your extra hard work with your daighter & her medical condition.