When he began this morning, she decided to hold off on administering loads of medicine and see how it played out. Philip's vitals are strong which is uncommon in a status event. Typically, a child in status cannot maintain oxygen saturation for hours--Philip was. As long as his brain is receiving enough oxygen, there is little danger associated with a status event. If those levels change they could decide to administer anti-convulsants. He was so exhausted yet couldn't go to sleep. It was hard to watch him but with the doctor's suggestion, we want to figure it out if it's not seizure activity. He finally fell asleep, completely konked out from hours of continual activity at 9:45. But as soon as he falls asleep, as happened both times yesterday, he is completely still and quiet, sleeping peacefully.
The doctor thinks this is probably due to the increases we made with Vimpat. I am pretty convinced this is the case as well given the observations of the last couple of weeks. We raised his Vimpat to 7 ml three times a day the Wednesday before Thanksgiving and he became more active the Friday or Saturday after that. I remember having a conversation with his teacher how that we were surprised he was moving so much. Then, we raised his Vimpat again this past Wednesday. These episodes started on Friday night after that. It seems that there is a fine line in some children with the metabolic amounts of Vimpat. The neurologist said that she has a patient who begins tremoring when she receives too much. But when they lower it a litte, it really helps her. That said, the neurologist is discontinuing his Vimpat while he is in the hospital and when his epileptologist comes in tomorrow, she will make the decision of how much and when to give it to him. Once again, we wait. Hopefully, as the Vimpat gets out of his system this will get better. Only time will tell. Until then, she has decided to give him a mild sedative to keep him sleeping since he does not have the movements when he is sleeping. We are glad to be making him comfortable. That is our goal! She will also add a medicine that is typically used to treat chorea and hopefully that will help. At least he is resting now! It makes me feel so much better that he is not so exhausted with the constant moving but can't sleep.
This is a good example of why the hardest decisions we make are medicine-related. There are some pretty significant results at times.