here:
After a long day at GOSH, being sent back and forwards for different clinics I have the following update:
- Developmental Clinic - he is functioning at a 6month old level (apart from his gross motor skills - ie he can walk, though that seems to be getting wobbler )
- MRI - done under GA, he was v upset for a long time afterwards, the Prof & other docs will look at the results tomorrow
- long chat with Registrar & quick chat with Professor (she promised a longer chat tomorrow after she's seen the MRI & some of the Telemetry), he is having Infantile Spasms not drop attacks or atonic seizures, or whatever else we've been calling them.
His IS started later than normal which is a Good Thing apparently, and it appears to stem from his known focal cortical dysplasia, which is also a Good Thing.
He is probably going to be a good candidate for surgery and surgery has been recommended as 'urgent' by the development people.
The Development Prof even half-joked that H couldn't have surgery tomorrow as the surgeon is away.....
We are back tomorrow morning for him to be hooked up for the telemetry for 24hrs. the prof said she'd come by in the evening when there should be enough info for her to look at.
And she wants to change meds too - agrees that the Trileptal is a waste of time and that the Keppra could be brought down too.
We may be starting on something new (IS-specific) from tomorrow.
we just want our DS back, and soon. positive vibes sent our way please