Dagny's mum wrote:If her meds are late or the weather is bad...
It seems to be changes in air pressure that cause the problem, so I find it's worth keeping an eye on the weather forecast (the BBC weather site is very good and gives you air pressure for 5 days ahead, so you can see patterns). In the UK for example, the pressure plummetted last week and Oliver was having more trouble with his eyes (presumably because the pressure was affecting his dilated ventricles). If you're allowed to make adjustments to Dagny's medication (ask your neurologist), this is a situation where you can to some extent foresee problems and an extra bit of gabapentin or whatever Dagny's on might help.
So glad Dagny's doing well.
Kate, Oliver and Aled
PS Just checked the UK weather for my area (West Midlands) and over the next 3 days the air pressure is forecast to drop a huge 45 millibars, so I'll be taking precautions to keep Oliver out of bright light.