We saw Paed yesterday and she is amazed that is development is catching up given what he has gone through. It was interesting when she admitted that when she saw him at almost 12months dragging himself along the floor as his left arm and leg didn't work properly and he was quite developmentally delayed that she was really worried yet she never conveyed that to us, for which I am thankful for. She is still concerned about a few things the longer events which happen around once a week, plus others at night, his strange uncontrolled spasms/jerks which happen randomly most days and his very active sleep which she feels is events.
She has referred him for a sleep study to see if they can try and work out if what is happening with him overnight are event's and then if they are what type. Paed is a bit worried re the length of some of the "events" overnight. She did say they may not be able to give us an answer as his lesion is deep in his brain and the eeg's he's had during the day so far have not picked it up other than a slowing the back right side of his brain. She is also looking to see if they can see a reason why he has trouble walking when he wakes us, sometimes his legs don't respond at all, other times he's really unsteady or his legs lock straight and stiff and his toes point down.
We don't see his Nureo till the end of Feb to get his next MRI results, but wil mention the sleep study when I email the Nureo our monthly update this weekend. It will be interesting to see if he has any comments re this.
As Paed said it may not show anything but who know's no one expected to find what they did on the MRI.
Donna
She has referred him for a sleep study to see if they can try and work out if what is happening with him overnight are event's and then if they are what type. Paed is a bit worried re the length of some of the "events" overnight. She did say they may not be able to give us an answer as his lesion is deep in his brain and the eeg's he's had during the day so far have not picked it up other than a slowing the back right side of his brain. She is also looking to see if they can see a reason why he has trouble walking when he wakes us, sometimes his legs don't respond at all, other times he's really unsteady or his legs lock straight and stiff and his toes point down.
We don't see his Nureo till the end of Feb to get his next MRI results, but wil mention the sleep study when I email the Nureo our monthly update this weekend. It will be interesting to see if he has any comments re this.
As Paed said it may not show anything but who know's no one expected to find what they did on the MRI.
Donna
