Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Sigh… so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she will be so wiped out I won’t be able to feed her before our long car trip to Phoenix. Ugh. She seems to do well for awhile and then bad. Well never well, well, but not two big seizures in a day.
I don’t know if we should try those changes again, but I am so afraid after her reaction to the Depakote last time to try it again. I am sure as all hell Keppra does nothing, but I don’t want to wean without a plan and I am not sure I want Depakote part of the plan. Another problem is her drops are increasing. But if I up the study drug too much she seems to have worse GM’s.
Last night Andrew was going off about not liking these new seizures and wanting change and I said “then you talk to the Dr., I’m tired”. I wasn’t trying to be rude, I am just tired. I am tired of seeing my baby seize every day too. I am tired of trying new things to see it back fire. I am tired of feeling so much guilt for ever starting this study. I just want to hand the reigns over to him and silently bow out. I just feel I am out of options.
I’m tired.
Sorry for being a party pooper I am just bummed.

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