Our battle with Seizures

August 31, 2012 through October 1, 2012, Maddie spent her time fighting for her life and getting her seizures controlled at the Children’s Hospital. She had started an additional anti-seizure medication called Onfi (Clobozam) in addition to two other AEDs (anti-epileptic drugs) on August 21 and became more lethargic with increased seizures. At the hospital, she was given emergency seizure meds and one or more of them could have possible made her seizures worst because the real cause of all her special issues is still unknown. She ended up having generalized status epileptic seizures which means she was seizing nonstop (subclinical: the ones we couldn’t see and only through EEG readings) and no seizure meds were able to help her which forced the doctors to put her in a medically induced pentobarbital coma. This was extremely scary for us as we were told by the PICUneurologist that 20-30 % of individuals die from epilepsy especially if the seizures were intractable to all kinds of drugs. When she was being weaned from the coma, she began having more seizures so she was placed in a deeper coma.  Anytime, she would be stimulated (blood draws or diaper changes) she would have clinical seizures. The PICU staff decided to try a ketogenic diet along with steroids to see if that might help. She was able to come out of the coma and was able to go on the general pediatric floor on Tuesday, September 25. Maddie was seizure free for 8 days with the addition of the ketogenic diet, Phenobarbital along with Keppra and Topomax to control her clinical seizures. She began having more seizures that Tuesday night and was finally released from the hospital on Monday, Oct. 1 with intractable seizures still and a discharge diagnosis of seizures: regressive epileptic encephalopathy.  It means her brain is dysfunctional and no one knows why. As of right now Maddie sleeps throughout most of her day with a few hours of awake and she still has some breakthrough seizures,  her energy level is low and she smiles briefly at us each day…we are praying that her seizures will not become more progressive and get worse….