Friday, February 17, 2012

Quick update…

We arrived home tonight at around 6:30pm, exhausted, emotionally drained, nervous, but relieved to be home.  We are working on the dosing for Lucy’s anti-seizure meds.  She has not had any more seizures since starting her on the Keppra and pheonobarb regimen,  for that we are very grateful.  She is, however, one miserable baby.  Keppra has a nasty side effect of causing increased irritability, this is just what Lucy doesn’t need, more irritability.   I have heard this side effect  referred to as the Keppra attitude.  She was one miserable baby before we started her on these meds.  I’m not sure yet if the Keppra is adding to her irritability, or if  it is something else, or if  her behaviors are heightened because she is exhausted and in need of getting back into her routine.  Because of all of these things, we were given the option of coming home tonight and work at sorting out these issues on an out patient basis.  Although she is clearly not better, it appears that we have stopped her seizures.  We figured if she is going to be miserable and screaming at least we can be miserable in the comforts of our own home.  

Thank you for all of your thoughts, prayers, love, and support.  I am staring at a large pile of laundry and an even larger pile of medical supplies, meds, and TPN bags that need to be put away.  I think I’ll put the med supplies away tonight and save the laundry for tomorrow.     

4 comments:

Reagan Leigh said...

I've heard it called Keppra rage and from what I understand supplementing with vitamin B6 seems to help. You may want to ask her doctor about that. Thinking of you guys and wishing you weren't having to deal with seizures on top of everything else!!! (we know seizures all too well)

Kristina said...

Do you want some help on the laundry? Emma is off from school this week and we could come out and I can work on your laundry one day. Let me know if you do - you might really enjoy the bit of a break from laundry even if it is only for a day!

Helen A said...

Thinking of you all. Hoping Lucy is having some better days . Tell her I miss her and will see her soon.

Jessica said...

Eithene had *miserable* Keppra rage. It was an awful experience. After 10 days we just couldn't do it anymore. I have heard that adding in B vitamins can help. We never tried that.... but maybe Lucy can? :( I hope you can find a good balance of meds and QOL. It's a hard place to be stuck in.