The worst part of witnessing her seizures is how helpless you feel. I've never felt so out of control. All I can do is rub her belly and tell her how much I love her. I must repeat "it's ok" and "I'm so sorry" a thousand times when she's having one. It's such a horrible and heartbreaking experience to watch.
Tomorrow we'll be starting her on Topiramate (15 mg.) which is an anticonvulsant. It works by decreasing abnormal excitement in the brain. Hopefully this with the increase in Keppra will help.
In the meantime, we'll continue to take it day by day and hope to get a handle on the seizures soon.
Oh Brien and Holly. Our hearts ache for you. We keep hoping that all of the support and medications will help Gracie to be as comfortable as possible. Don't give up hope or faith that Gracie will surprise us all. We love you and are here for you. the Deckers
ReplyDeletei both cried yet giggled when i read your "speech" during gracies seizure episodes....my son Aiden was born oct. 22, 2009. he was diagnosed with NKH shortly after. i am a stay at home mommy and when Aiden has seizures i say exactly the same things that you do...it is so difficult and heartbreaking to watch and knowing that there is nothing you can do except say "im sorry" and "it's ok" and "mommy's here" and " i love you". Aiden is doing better with some new meds we are on though so we are just taking things one step at a time! you sound as if you are making the right choices and are well informed! Gracie is in good hands...take care of yourselves as well! our little angels need us...
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