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Thursday, October 17, 2013

To catch you up on our situation...we've had Sanai about 15 months now and she's had approximately 30 febrile seizures.  I had never even heard of febrile seizures before she had her first one. I honestly thought I had overdosed her on Tylenol the first time she had her seizure. She had this blank stare and was unresponsive. She actually had her convulsions while I was speeding to the hospital so I could hear her but I didn't see her.

Luckily these seizures only last 2-3 minutes and are always associated with a fever.  It's not necessarily the fever that causes the seizures, it's the sudden spike in her temperature that causes a misfire in her brain.  After she comes out of her seizure she's usually awake long enough for me to give her some medicine and then she sleeps for several hours because it really wears her out.

I've almost given up going to our primary doctor because when I do they can't ever find anything wrong with her that is causing the fever. She has no runny  nose, no ear infection, no cough, nothing!  They've taken her blood, taken urine samples, swabbed her throat, NOTHING!  I now just call my doctor, tell him what's going on and take his advice...which is usually just to wait it out.  There's nothing else we can do. 

In the waiting room being silly

My biggest frustration is the fevers, they literally happen once a month and there is no symptoms. I wanted to talk to the pediatric neurologist to find out more as to whether this is normal among internationally adopted children. I know she hasn't built up as many immunities so maybe she's more susceptible to our diseases.  They said they haven't noticed anything related to internationally adopted kids at all.

They said basically that we just have to endure what's going on.  The most "active" time of febrile seizures is when they are 18-24 months so we are in the worst time.  They said she won't grow out of this until she's 5-6 years old.  Arggh. 

The one piece of advice they offered was to give her the seizure medicine they prescribed BEFORE she has a seizure instead of waiting until she has one.  She always has a fever anywhere from 2 hours to 24 hours before she has her seizure.  There's only been two cases where she's had a seizure and we hadn't noticed the fever because it literally had spiked in a few minutes.  Hopefully this will stay ahead of her episodes and help prevent them.

Being such a good girl in the room

The neurologist said that they would be more worried if she were developing slower than what she should be but she's right on track. She was happy, all over the place and was giving all the doctors high five while we were there so he said there's really nothing to worry about.

And honestly, seeing all the sick children at the hospital made me thankful that we have a situation that in a few years will only be a memory.  Her situation could be much worse, so I'm simply thankful that we had access to doctors who can help ease our frustrations and fears and help us through this time.

We greatly appreciate all the prayers!

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