Thursday, July 11, 2013

Epilepsy in July

(blurry picture- courtesy of blogger glitch)

Sometimes I'm surprised to learn something new at a doctor's appointment... 

This might sound strange, but for each of the (over) 10 specialists we see for Abby's care, over time I've developed a list of expected things to happen.  

Some will want detailed reports about her weight gain, or her birth history... others don't.  Some providers have become my personal friends, some have not.  Some need detailed information about her medications, others don't.   There are visits where we have to enter into a "hard" conversation about an aspect of her life, others we can laugh and essentially engage in a more casual conversation.  Some show concern for my mental health, others are too busy to care.

Abby's seizures have increased steadily over the past months.  Today we saw her neurologist for a regular 6 month visit.  I reported about Abby's seizure activity.  Along with these seizures she continues to have episodes of unexplained fever.   Although we already know that Abby's thermoregulation system is 'out of whack,' for lack of a better term, I found out today that one of her medications also contributes to swings in her core temp.    Needless to say, I was surprised and a bit relieved to learn this.   There really are reasons for this strange, physical change that makes sense.

Today we added a new seizure medication to Abby's cocktail.  It's not supposed to have a sedating effect, which is good news.  It also comes in a liquid form which I'm VERY happy about!  No more opening capsules and carefully spilling their messy, powdery contents into a feeding tube.

Over the next 6 weeks we will be slowly adding the new and weaning off the old.

Hopefully for Abby we will start seeing some improvements!


Kris and Lisa Goodwin said...

Glad they are trying out new meds! Praying they work better. It was great seeing you guys again! We always think about you guys and so glad God brought us together through the simplest thing as the rug :-)

God bless

Christy Younger said...

Happy for the new info-
Praying about the seizures..
Love you guys!!!!