For almost two weeks now Izabelle underwent a trial for the medication Phenytoin commonly known as Dilantin. There were not serious side effects until Izabelle reached her goal dosing by Saturday of last week. She was reported to have upwards of six seizures last Saturday by her dad. By Monday, Izabelle was complaining of stomach upset and fell asleep during class at school. On Wednesday, after a field trip swimming she fell to the floor holding her stomach in pain. I left work early again and fetched her in Wiscasset. Wednesday afternoon she had two clusters of seizures that lasted 5+ minutes. I almost administered Diastat for the second cluster. By Thursday afternoon Izabelle's neurologist suggested lowering Treleptal to lesson stomach pain. Immediately my mind flashed back a month to side effects of Felbamate and Vimpat. She and I could not handle another debilitating month of crazy seizures, stomach pain and exhaustion. I recommended we step off the new medication as our admission to Boston Children's hospital was fast approaching. We deserve a week of 'normalcy' before our life completely changes... We started the step down Thursday night. Izabelle then went to her Dads for the weekend.
Mothers Day:
This morning Izabelle woke to a cluster of seizures lasting 10+minutes. Her father administered Diastat rectally to stop seizures. He called me to let me know what was going on. I called the on call doctor and set up a conference call so he and I could speak to the neurologist directly. Izabelle unlike other patients experiences a direct increase in seizures instead of the opposite when coming off of medications. I told her dad to keep Izabelle laying down and let her sleep it off. We had a conversation in which I started to cry because I wasn't able to be there for her. This is not anything I wish on any parent. It's one thing to send a well child to their dads and an entirely different thing to send a child with a complex health issue away for the weekend. I retrieved Izabelle around 10am this morning and found her well and happy for almost the rest of the day. 
It's 8:58pm and I'm still waiting for her to go to bed because she fell asleep earlier in the evening and woke back up. That saying, 'a mothers work is never done.'... is the damn truth!
*Our next step is the Ketogenic Diet. I am trying to keep my expectations low so I don't get disappointed but I'm so up for the challenge.
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