Things seem to be getting worse for Gracie this month in terms of seizures. Pretty much since she started the ketogenic diet, all of her seizures have been explained. Basically, they had an explanable cause such as an active illness or the onset of an illness. All until this month.
She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.
Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.
They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!
She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.
We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.
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Oh no! I'm so sorry. Poor Grace. I'm thinking of you all.
ReplyDeleteWhat a roller coaster ride! I'm glad that she is at home to recover, and I hope that she does it quickly!
ReplyDeleteAunt Cherie here . . . Uncle Mike and I are thinking of Grace, hope she's feeling better soon! We are also hoping that Grace will have a better month in February --- We are rooting for her!
ReplyDeleteHopefully Feb will be better. Hang in there guys! you all are in my prayers! xoxo Ms. Donna
ReplyDeleteMy thoughts are with you .
ReplyDeleteMs Trudy
As always, y'all are close in my thoughts and prayers!
ReplyDeleteBIG hugs!
Love, Maree :~D