Wednesday, June 27, 2012

seizure update



Dr. Neuro was trying to hold off on increasing meds until after Trevy’s EEG at the end of the month.



I emailed her after the “bathroom episode” and she said if we saw anything else we’d increase Dilantin. 



The Bathroom happened on Friday.  The following Sunday Trevor had a very nasty myocolonic jerk during worship.  It was one of the violent make him gasp and give you a goose egg if his forehead whacks yours full body crunches.  It was all of 2 or maybe 3 seconds of violence.  But immediately afterward he was calling my name.  Insecure and upset.  We have a “helper” on Sundays – I asked her if she would just take him home and baby him.  She’s been with us for several years now and loves Trevy.  And he loves her.  Otherwise I’d have taken him home myself. As it was I sat through the rest of the service thinking of nothing but getting home and holding him while emailing Dr. Neuro with my other hand. 



Sorry, honey, I know your preaching rocks.  



Since the Dilantin increase we have not seen any violent episodes.  However, there are still whisper twitches in his face.  I call them whispers because it’s so very subtle that I’m actually a little embarrassed that I even notice.  The majority of the world would think I’m a whack job if I pointed them out.  But they’re there.  Lurking.  Keeping me edgy.



I’m having weird dreams.  Dreams filled with seizures and other tragedies.  How morbid is it that I dreamt he drowned?  Only I’d forgotten about it.  Until I went to give him a bath last night and my palms got sweaty.  I was a jumpy basket case even though he was happily splashing the walls.  I’m such a nut! 



Maybe it’s just the edgy feeling of knowing that something catastrophic could happen…but never knowing if or when it will.  I try really hard not to dwell on the “coulds” but they’re always there.  Nudging and poking around my heart.



Life as a Seizure Mom.  Sigh…





Lisa said...

Ugh...I'm so sorry. I have a pit in my stomach for you. At the risk of sounding like a broken record, I HATE seizures. Big hugs.

Kristen said...

Heart wrenching pit in my stomach! You are not crazy! You are Trevy's Mom. An expert at all things Trevy! Prayers for fewer seizures.

Kristen said...

Heart Wrenching. You are not crazy. You just "know"! Pit in my stomach for you!

Brenda Rhodes said...

I am so sorry for his seizures and for your sweaty palms. As a seizure suffer and more importantly a MOM, I would never think you are nutty for noticing or worrying. I pray for Trevy every day. You are so blessed to have Him in your life and he is equally blessed to have you in his life!

Sylvia Phillips said...

Sorry Trevy is having seizures. praying the med increase works.