6 Days in Hell

[goldilocks70]

This describes the last week with my daughter and her seizure disorder.  She's had seizures since the age of 4.  Now, at the age of 18, this is probably THE most vicious cycle of seizures she has ever had.  She's had 24 seizures and possibly more to come.  The last time anything comparable to this happened, she ended up being hospitalized.

Her seizures have become very violent.  I outweigh her by about 20 lbs and she took me down with her in some sort of fit of super human strength.  Add the fact that over a year ago she suffered her first of many shoulder dislocations, this really sucks!!  According to the "bone" doc, it's much more serious than originally thought.  He thinks it's a combination of neurological and tramatic.  Basically, Friday we were told the seizures HAVE to be under control for no less than 3 months before he will operate.

It's insane that her seizures have somehow evolved to this horrible degree.  Granted, she has taken a wide range of medications.  We chose the meds that would not be harmful to the liver.  All of the meds were deemed ineffective.  Not once did we ever have "hope" in any medication controlling the seizures.  The only "comfort" we had was having Diastat (rectal Valium basically) on stand by for the more serious episodes.  Even that had become useless.  I ended up researching a more natural approach to this and we started introducing natural supplements.  They have worked as far as lessening the severity and amount of seizures for the last 2 years. 

The pediatric neurologist is/was supposedly THE best in Southern California, yeah, I would like to slap whoever started that claim.  Most of his patients are in a pretty obvious catatonic state, so maybe that statement rings true to those families.  But then, there's the few patients he has like my daughter.  Sure, they are developmentally challenged, but their overall function is manageable.  This man was nothing but a drug dealer.  We thought he would have given her an aggressive treatment plan and we were so wrong.  I recall bringing what I thought to be a very important clue to his attention, not once, 3 times.  My daughter craves salt from time to time and I believe this to be indicative of something metabolic. 

My daughter turning 18, I feel, will also be a huge turning point in her treatment.  I'm excited about the options that are available to her now.  I guess I wanted to vent a little because of the hellish week we have had.  I know that there are plenty other families dealing with their child and seizures and it's very important to stay positive in this.  For us parents that don't know what has caused the seizures, keeping track of the seizures, the behaviors before and after, all of these details can just help bring us closer to a reason why.