Our follow up appointment with neurology was at 1:30pm--too bad they couldn't have scheduled it immediately after the neurosurgery appointment. After talking with the epileptologist, the plan of action for now is to lower one of the medications that Philip is on that is causing the tremors (almost like Parkinsons) which affect him getting food and drink to his mouth, reading books, and just regular playing. We have also noted an increase in drop attacks over the past weeks, so we will raise the medication he is already on that addresses drop attacks. We have seen good results from that medication in the past, and hopefully will see it work this time as well. If everything goes well with those two adjustments we will look at starting to wean him off of another medication that he is on that we haven't really seen any good, or bad, results from. It would be nice to start weaning him off of that medication now, but it is best not to make too many changes at once.
Once a patient has "failed" 2 seizure medications the likelihood of any other seizure medications being a "miracle" cure and stopping the seizures is greatly diminished. Philip has "failed" 6 so far because none of them have stopped the seizures. While there are some other medications we can try, the likelihood of any of them working to stop all the seizures is very low. Because of this, the epileptologist has encouraged us to consider putting him on the Ketogenic diet. It is a rather restrictive diet but ,there has been about a 2/3 success rate in significantly reducing seizures in patients who otherwise don't respond well to medication. It would be a closely monitored diet, and we would be working closely with the epileptologist and dieticians to make sure he is getting the necessary nourishment. He would go into the hospital for the first few days they put him on it. It is not a diet you would want to go on without some good supervision and dietary help but it is a consideration. We have known about this diet for a while and are definitely prayerfully considering this as a treatment option, especially since nothing else seems to be real effective. The hospital is not set up yet to monitor those on the Ketogenic diet, so it is not something we are looking to do soon--but maybe look at starting in the next 6 months or so. In the meantime we will continue to adjust medications and possibly try some of the other medications that may be helpful.
Following the appointment with the epileptologist, we got home about 3:30pm. About 5:45pm we were putting things in the car to head to another hospital, this time not for Philip!
Ethan Benjamin Logue decided he wanted to be born at 10:41pm. Everything went well with the delivery. He was 6lb 11oz and 19 3/4". So, Philip and Joyanna have a new baby brother. Nothing like packing a good number of events into one day!
Ben