It's all mapped out

Izabelle and I traveled to Boston on Wednesday to meet the emfamus neurologist Dr. Pearl who was Reccomended by our friend Melissa who's son Noah has been seizure free for two months since their visit. 

After explaining Izabelles journey to both the attending and Dr Pearl they concur with Dr Morrison, our neuro in Maine. They are interested in the genetic and metabolic panels that were ordered by Dr. Smith and are ordering a MRI and the spinal (to test neurotransmitter levels) just to see if there is something there. They don't suspect there will be. They also think that Banzel is the right next med for her. This was reccomended already. They said the next step would be vns if nothing new is found. If that doesn't work then this will just be her way of life. I asked again if there was a possible way that Izabelle could still could outgrow the seizure they said yes. At age 10 or after puberty. Dear God I sure hope so!!! 

Izabelles increase of Zonisamide has helped shorten seizure duration a bit. She is super foggy and having a hard time processing both want she wants to say and what we say to her. Basically we choose to have a chaotic life with severe seizures with more windows of our spunky kid or we have less seizures and a sedated kid...there's still a few options we can try with cannabis but we can only change one variable at a time. 

Today we are enjoying a quiet morning at the lake.