We talked several times today to Dr. Herren. She will now be Philip's primary doctor for epilepsy. His neurologist was ready to turn Philip's case over to Dr. Herren because she is a pediatric epileptologist and specializes in cases just like Philip's. We heard again many things that we already knew--Philip's brain is just not normal. He has abnormalities, including the electrical activity in his brain. His EEG doesn't look very normal in its natural state so, although she could see spikes in electrical activity that are seizures, she couldn't tell where the seizures originated exactly. She could tell if they were generalized (all over his brain) or local (in only one spot). Philip is having both. This means he is not a good candidate for surgery. Surgery would only help if all his seizures were coming from one place.
The game plan we developed with her was to add a new medicine that is specifically suited to his seizure types. Although the medicines he is taking right now seem to be helping, they are not controlling the larger tonic seizures he has 5-6 times a day. Those are the seizures she would like to target to better control. If this new medicine helps those seizures to stop, we will wean off one of the existing medicines that hasn't seemed to make a big difference.
If this medicine doesn't seem to help control the tonic seizures over the next 6 months, we will consider a procedure to add a Vagus Nerve Stimulator (VNS). This is a small device implanted under the skin sort of like a pacemaker. It would be connected to the vagus nerve and be programmed to emit a small electrical charge at certain intervals. This would help to counteract the electrical activity happening in the brain and give an overall calming effect to the brain. It would require a surgery to implant. This would not be a cure or fix; it would just be another type of treatment that has been very helpful in recent years.
Philip has many seizure types but mostly his seizures are tonic and atonic. He does not have any tonic-clonic (grand mal) seizures. We also found out he is not having seizures while he sleeps. That was very good to know. He gets to rest at night. Some of the episodes we marked on the video are not seizures. They are most likely just individual traits that most people would have but Philip can't communicate about. One such would be times when he stares off into space. Sometimes these can be seizures but he is probably just zoning out or concentrating on something.
Dr. Herren basically did diagnose Philip with an epileptic encephalopathy [en-sef-uh-lop-uh-thee]. This just means that he is having so many seizures that his brain cannot function properly. This causes learning and development handicaps. The syndrome he would most closely resemble is an epileptic encephalopathy called Lennox-Gastaut Syndrome (LGS). Philip does not have the distinct EEG pattern that would diagnose him with LGS but the symptoms he is experiencing will be very similar to those with LGS.
So the plan summarized is to try medication, possibly VNS, and if those options don't work, there are other more extreme options we could consider in years ahead. Please pray with us for direction and guidance, for his doctors and for balance in treatment options. It would have been nice to have a definitive answer from this EEG study but his health issues have seemed to defy explanation all along. The Lord does have the answers, although they may not be the ones for which we're hoping. We have placed Philip in His hands and hope that he fulfills the purpose God has intended for his life.
It's hard to know how to clearly communicate all of this information. If something seems unclear or you have questions, please send me an email using the contact tab above. I will try to explain or clarify anything.