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. 

The fight for answers resumes...

I've just about had it! Seizures are back in full swing just as if we never tried any other measures to control them. We've been trying various amounts and types of medical cannabis since late December to no avail. Last week Izabelle pretty much went into status for three days. Diastat and Adivan failed to stop them quickly. We were told to up pharmaceutical meds again by our neurologist. We have noticed that Izabelle has been coming down with low grade fevers consistently for weeks. We had every test in the book done to rule out infection. No infections or anything irregular about her bloodwork or urine analysis. 

Today we visited Dr. Smith for a Genetics consult. The day started out with a grand mal at home. Izabelle had a second grand mal in the car on the way there. I had to administer diastat on the side of the highway. It was another first for me. I left her unconscious in the back seat and continued driving her to the appointment. I had already called the neuro office and knew that if anything else happened that we would be in good hands. When I arrived, I called the doctors office and asked for a wheel chair to transport Izabelle inside. 

She slept through most of the appointment. Dr. Smith will be looking at Izabelle's chromosomes and DNA more closely. I may also go through with some testing myself. I'm also relieved that Dr. Smith will also be doing a whole metabolic panel as well. Not one doctor has recommended this and I hope we learn something! I have also requested another MRI and may be doing some spinal fluid testing for neurotransmitters in the future.  Tomorrow we go see a neurosurgeon regarding the VNS implant. I hope it's an easier day of traveling.