Well we made it home from the hospital last night around 8 pm. Ryan is stable and not seizing. However, he is having constant "spastic" activity. Unfortunately, his Neurologist is out of town for the week and is traveling some where without good cell phone reception.
On Tuesday they did a 3 hour MRI of Ryan's spine and brain with and without contrast. Beyond the new seizure meds, the MRI, the lamictal level blood test, and the 24-hour EEG, the Hospitalist felt there was really nothing else they could for Ryan. So, we're home waiting to see the Neurologist when he returns.
The spastic activity means that Ryan's arms are constantly flexed and moving, and his upper body sometimes jerks like he's trying to sit up. When it intensifies, his lower body stiffens and he "scissors" his legs. ("Scissors" is the term used to describe crossing at the ankles.) The spastic behaviors are obviously very uncomfortable to Ryan. He's not resting well. His eyes are bloodshot from being so tired. The nurse today suggested that we alternate Tylenol and Motrin. That seems to give him some relief.
So, what's causing the spastic behavior? Well, we don't know for sure. It could be whatever disease or syndrome is causing everything else. Or, it could be that the 3+ hour seizure he had on Saturday did nerve damage. Hopefully the Neurologist or the Metabolic Geneticist will have some input next week. And, more importantly hopefully we can get Ryan something before next week that will give him some relief from the spastic behaviors.