Okay, so....

Gosh...I don't even know where to start. 

On Monday night, I had to take my daughter to the hospital due to extreme stomach pain and vomiting.  I honestly thought she had a virus, but with her and the fact that she has epilepsy, you really can't be too careful.  I'll spare you the details of the next thirteen hours, but the diagnosis after all of that was a kidney stone in her right kidney.  Approximately 5 mm in diameter, and it had lodged itself in the opening to the tube that drains her kidney into her bladder.  Consequently, her kidney was filling up with fluid and leaking into her body, causing her body to become sick. 

A stone similar to the one my daughter has.

She had a stint put in yesterday to help drain her kidney, and some time in the next couple of weeks, she'll be having another surgery to remove the stone, and take out the stint. 

Why am I putting this in an epilepsy blog?   EXCELLENT QUESTION!!


Up until Monday night, my daughter had been on Zonegran.  One of the rare side effects is kidney stones.  (I won't mention that in the last few months, my daughter has experienced several bathroom accidents, and every time I took her to the doctor and said I really thought she had a kidney stone, I was told I was wrong.) 

First and foremost, this is an argument for being informed and educated about the side effects of all medications.  ALWAYS, ALWAYS, ALWAYS BE AWARE!! Second of all, this is an argument for being more assertive with doctors about the fact that sometimes the parent really does know best, and I'm not some freak with a need for attention.  I could have ended this months ago if I had put my foot down, and let the doctors know I was not going to be dismissed.

Finally, this is a chance for me to explain that this is just as much related to her diagnosis of epilepsy as her seizures are.  The fact of the matter is that if she didn't have epilepsy, she wouldn't have had a kidney stone.  To treat them as separate medical issues that aren't related would be wrong.

She's being placed on Tegretol.  The pediatric attending at the hospital told me it was a sister drug to Trileptal, which scared the bejeezus out of me.  She'd been on Trileptal before, and it was a horrible experience for us.  Her seizures increased from a few every six to eight weeks to a few a day nearly every day of the week, and I feel that Trileptal is to blame partially for that.  It also could have been the natural progression of her condition, too.

The last thirty-six hours have been wearing.  We're all exhausted, even though my daughter is doing so much better.  We're also all scared of what this medication change could mean for us.  Will it bring back uncontrolled seizures?  If it does, will she start losing development again?  We've made so much progress the last few years, and the thought of losing it all again scares me senseless.