Minnesota Epilepsy Group

Met with Dr. Frost again today. I can't believe it has been 6 months since we were here last. Even worse I can't believe it has only been 4 months since his last seizure.
We were really hoping to get off the Topamax since it is causing the acidosis and not allowing him to sweat. We decided it would be best to take this really slow. We are coming down on the Topamax but not completely off. There will be a two week decrease schedule we have to follow then call back and let them know how things are going. It was a great visit, but wish we had a few more answers. I guess I need to find a few more questions first!

Met the new doc!

We finally met Dr. Lee today. What a relief! We are so excited to get to know him more and for him to know us more.
He seemed very upbeat and ready to do anything. He has a neurology friend that he has been able to ask question to and help out as much as possible. Dr. Lee gave us some questions to ask when we go to Minnesota. We'll have to update him when we get back!

Med increase

Heard back from Minnesota today. Jayen's bicarb level is pretty low and they would like to increase his sodium citrate by .5 mL to bring us to 5.5 mL. This wouldn't be a big deal, but Jayen HATES this medicine. We order it flavored and make sure we give him a drink immediately after to chase it down. Hope he adjusts well to the changes!