Wednesday, October 3, 2012

Neurology Team Meeting

First, I would just like to say thanks! Thank you to all of those who have been praying for our family, and especially for Ethan. Today we met with Ethan's Ketogenic team. This includes the Neurologist, Dietitian, Pediatrician, and  Pediatric Nurse. It was a great meeting. We knew that the very first suggestion from the team was going to be to add another drug, and we were right. They would like to add lamotrigine, to the long list of medications that he is already taking. Don't get me wrong I am not totally opposed to medication, it's just that we have yet to see any of them work. Statistics tell us that after 3 failed medications there is an 80% chance that the next ones will fail as well. We suggested weaning him off of two of his current medications before trying any more. You see I have this prompting from the Holy Spirit that the drugs may be making the seizures worse. How do you explain that to the doctor??  Well, the Neurologist was very open to our idea of weaning Ethan's current medication before starting any new ones. Praise the Lord!!! So in the next 6 weeks we will slowly wean the medications that he has been on the longest. It will take 6 weeks because he is on such a high dose. Please keep praying for us during this time. The Neurologist says that he thinks the seizures will increase a little with the decrease in medication. I am praying that we see a decrease in seizures. In fact I am praying that we see all of them go away. I know that our God is bigger than this thing called, "Epilepsy." At the end of the 6 weeks we are going in for another appointment and then they are wanting to either add lamotrigine, or they want us to strongly consider the Vagus Nerve Stimulator. I am glad we don't have to do either one yet. Ultimately we want what is best for Ethan. We also want him to be seizure free with out making him into a zombie from all of the medication.

We are praising the Lord for a medical team that is willing to listen, give good advice, and ultimately leave the decision up to us. We definitely need wisdom in how to proceed. We have some tough decisions ahead, and we could have a very interesting 6 weeks ahead.

God is faithful. He has sustained us thus far, and I know that he will continue to lead us.

Thanks again for your prayers. We can feel them!


  1. You guys are loved ~ we continue to pray for little Ethan. Believing with you for complete healing!

  2. You guys are on my mind often and I am praying for a miracle :) Love you guys so much!

  3. So, so happy to hear. Ho wonderful! I believe the Lord went before you and the outcome is blessed. Hoping for good results to come.

  4. AWESOME! God is, God is GREAT!

  5. We pray every night for Ethan and for your entire family. We will pray that the wean will be uneventful and that this new med will be your miracle. Felbatol appears to have been our miracle - despite failing numerous meds before that. We added it in desperation. It was hard to even get excited about a new med because we had so many 'honeymoon' experiences. But then one day turned into another and before long a week turned into 9 months of no seizures. We are believing with you. Our God is greater! Be encouraged!