Back to St. Paul

We went to see our Neurologist a week and a half ago and he told us there was nothing more that he could do for Grace and that she need to see an Epileptologist. We went into the appointment and the last wanting him to contact Dr. Ritter at Children's Hospital in St. Paul who we saw back in June but that never materialized. So we called Ritter and they wanted to see us, first they need to be updated on what had been tried, they figured we would be able to get in around November as the hospital was in the middle of a major computer upgrade but last Friday at around 4pm they called and they want to see Grace Thursday morning to be admitted. So we are heading up, we don't know really what will transpire just that this is the next step.

We are down to .2ml of Hydro-cortisone the steroid we switched to after the ACTH really messed Grace up, we are giving this to her twice a day and will continue until next Friday when we will drop to .1ml twice a day for two weeks after that the current plan is she will be off of it and then 4 weeks later Grace's immune system should be back up! They we can rejoin the wonderful world of daycare!

We are taking Grace off of Keppra one of the anticonvulsant drugs she is on, there was no evidence that it was working for her we will give her the last dose on Thursday morning.

We will try and put updates out here while we are in St. Paul.