Phenobarb

Charlie Claire has been on phenobarb since she was 3 days old...it was the first seizure medicine they tried on her and it worked pretty quickly and very well.  She left the hospital on 5mLs a day.  As she has grown we have had to get blood work done a lot to check her level and make adjustments accordingly. 

On Thursday night & Friday morning Charlie Claire had two 20 min long seizures.  After a call to the neuros office they had us give CC a "boost" dose (5mL) of phenobarb on Friday afternoon and then increase her evening dose to 7.5mL - up from 5mL.  So now she is on 5mL in the am and 7.5mL in the evening for 12.5mL total. 

Saturday evening (after having a fairly decent day) CC had a seizure from 7:17pm - 8:06pm.  She went from partial seizure (eye blinking, body trembling) to spasm, partial to spasm, etc. etc. I am not sure what the ER would have done but I actually thought that we were going to need to take her.  After that ended she PASSED the heck OUT.  We called the neuros office again this morning and they said that it can take a few days for the dose increase to kick in.  I realize that we aren't the dr's here and I know that if CC had actually been hooked up to an EEG it might not have (or it could have) technically registered as an almost hour long seizure but to us and our eyes that is what is was.  Thankfully, yesterday and today things have quieted down a little bit.

It is so hard to watch Charlie have seizure after seizure, day after day and just feel completely helpless.  At this point the anxiety level in our house is HIGH and we are just emotionally drained.  The reality of what is about to happen is officially starting to sink in.  While we truly believe in our hearts that everything is going to work out it is still a very overwhelming feeling to think about what Charlie Claire is about to go through...

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.

Proverbs 3, 5-6