Like I said in the last post, things have been anything but stable. Some days he does GREAT!!! Other days Parker has tons of seizures or is super sleepy from the drugs.
Some great things have been going on, though. First off- if you ever have a chance to go to a conference on something you are dealing with, GO!!! This past week I went to an AMAZING Epilepsy Conference in Anaheim and it was amazing. They had about 50 vendors and experts in all areas ranging from The Brain Recovery Project, to the Chelsea Foundation that provide grants for seizure monitors, to seizure detection/service dogs, to new medications, to several hospitals that were represented.
This is pretty incredible that he is mimicking sounds. What does the wolf say?
Then the best part is the speakers. Different speakers every half hour that are experts in their fields speak on the newest technologies and treatments available, and then open up to questions from parents and patients at the end. There were speakers on Autism and Epilepsy (my sweet nephew deals with both), Ketogenic diet, service animals, several neurologists and neurosurgeons... My favorite was a talk "New faces in Neurosurgery" introducing the newly hired neurosurgeons at UCLA and Radys- the two hospitals we are affiliated with. They both spoke, explained their training and the new amazing technologies at their hospitals and then opened it up for questions. The more I learn and the more time that goes on, the more we are leaning towards needing a hemispherectomy (where they remove or disconnect half of the brain). With Parker's seizures being so incessant and hard to treat, and the fact that the entire left hemisphere of his brain is ischemic (damaged) tissue anyway, it is looking like more and more of a possibility. And I am somehow at peace with that.
It was also so encouraging to talk with other parents and families. One teenage girl I sat next to showed me her seizure monitor wrist watch. She asked her Dad for permission and then shook her arm several times. Within half a minute, it texted her Dad that she was having abnormal arm movements. Then 30 seconds later, it texted her Dad her GPS location. Absolutely amazing. She also had a service dog that was trained that when she started having a seizure at night to pull all of her pillows and blankets off her bed and to go get her parents. Wow.
A lot of things are happening. I had mentioned in my last post about some other medications we want to try. All medications have side effects, but we are moving into the potentially much worse side effects. I really did not want to start this particular medication because of the potential permanent side effects, but at this conference I was able to ask lots of questions and get some reassuring answers. We started it and we will see what happens.
I have hope- and hope is good!!! We will see what the next few months bring.
Dr. Mathern presenting at the conference. He is the doctor from UCLA that performed the surgery to remove Parker's skull and vacuum out the blood that saved Parker's life.
Seizure monitor watches
