Saturday, April 17, 2010

One week down

One week down with the new med and well...significant decrease but not gone. working on a banzel wein at the same time equaled a not so easy week at school as seizures tend to hit in the morning as well....strong but short seizures at this point and sometimes a jerk here and there...if ya count the bigger ones Id say 3-4 of those a day...better than 20...but these guys are stronger..holds onto them for a few seconds and gets rolly eyes after and wines and wants to go to sleep for like 20 min er about frustraiting...I can certainly see going up on the Clobazam sometime soon...maybe next week er so...dunno yet.
Next week is spring break so we have some time to get her used to things and watch her for ill effects. I think she has tolerated the Clobazam pretty well actually but minus seizures she would be better..if only low doses worked..
She is sleeping on her blanket next to me and my heart aches for her..WHEN WILL THIS END!! Seizure Seizure Seizure...UGH and UGH.poor baby girl knocked out from her "episode" we have begun to call them.
We are thankfull she slept all night last night too after waking the last few nights in the middle of the night happy as a clam making her noises and waking in the morning grrrumpy as heck. from all that party time!

It was hard to explain why madie had a bad week at school maybe I shoulda held her home... I tried to explain that she is STILL on 3 medications right now and that she has not been sleeping well and eating well and seizures come in the AM..AND to top it off she was crazy constipated as well with tummy pains and large poopys...
They are beyond patient with Madie and just take her as she is..sometimes they have to walk her in her stroller with her blanket to calm her..she has been harder to soothe as well. and meltdowns were bad. :( I wish they would just call me when she gets bad instead of having to deal with all that...
Maybe a lil Banzel withdrawl as well??
This child I tell ya. Whew. Also spoke to the school nurse to update her on Meds and such and she was all asking how I cope with all this...asking if I had a support network etc etc..*sigh.
How do I cope?
Dunno. ONE day at a time.
No exciting plans today..rainy rainy day in CT...equals movies and laundry. fun fun.

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