I'm from Glasgow but I live in Oslo. My son Finn has #DravetSyndrome So I'm international and he has epilepsy. What a team! It's #InternationalEpilepsyDay ...stay tuned for updates throughout the day. Having a nap after watching Finding Nemo.

As you can see we are a bi-lingual household. That's not a seizure at the beginning: he's just woken up.

10.00, so time for lunch. Just two of us dining. Mamma and Liv gone for messages. Finn hasn't been in a shop since last March. Can't take my eyes off him until they get back.
#InternationalEpilepsyDay

Default setting: curtains shut. Finn is photo-sensitive and even at this time of year the sun can catch and reflect off the chimneys and windows of the houses across the street. In other news: there's a fire in Pontypandy.
#InternationalEpilepsyDay

Finn kept his lunch down for 3 days in a row. He often throws up, more difficult when it involves meds. We have to be careful with timing and dosages. He gets his combo of 3 anti-epilepsy meds twice daily, phosphate once daily and melatonin at bedtime.

Finn is never without "emergency meds", mainly to stop tonic-clonic seizures. If they don't work, it's an ambulance. We were fortunate having a great #Dravet team in Glasgow and help from @DravetUK at diagnosis and thereafter.
#InternationalEpilepsyDay

Nap no.2. Another one won't help sleep tonight. Lack of sleep can be a trigger for seizures, and SUDEP (Sudden Unexpected Death in EPilepsy) a constant worry. Cameras,motion sensors and sleeping with him are the norm.
#InternationalEpilepsyDay

Likewise, we are fortunate to live in Norway: we have a great team at Ahus (hospital) and SSE (epilepsy research hospital); great staff at barnehage; and fantastic support from Social Services. Dravet Norge is also there when we need them.
#Dravet

Part of that support is respite care twice a month. Finn loves it there. He's got a great team that really looks after him. We are very grateful for the chance to spend more time on his wee sister. And maybe get some sleep if she let's us.

Finn needs bath and his teeth brushed. One can cause seizures, the other vomiting. He hates getting his teeth brushed and, much as we try, it doesn't happen often enough. He's having a good day. We'll try both. Today's 2nd anniversary of autism diagnosis .

3rd feed noted on Finn's blackboard. All feeds and meds given in 24hrs are noted on there. Handy for us and ambulance crews.
They can take picture of it to avoid any confusion over meds and dosages.
#InternationalEpilepsyDay

Lots of people have epilepsy. There are different types of seizures and different types of syndromes. There are some conditions which can be controlled by medicine and some that cannot. There is no such thing as "good" epilepsy.

Despite my best efforts Finn is having a 3rd nap. Fair enough, he's had quite a few focal seizures, so is tired. Good job he's not in the kitchen ... that light is dangerous. Blinds will have to come down.

Finn gets regular blood tests to monitor the efficacy of his medicines. Last autumn they showed a phosphate deficiency. He's about to get his daily dose if I can drag him away from Postman Pat.

Finn doesn't really eat, but it doesn't stop us trying. Liv ate it. He did have a sip of water. Started doing that last week. Hope it continues.
#YerTeasOot

6 o'clock feed done. He's now the perkiest he's been all day, having fun with Mr Tumble. Do his meds in 10 minutes (12 hours after this morning's). I'll dim the lights, turn off the telly, and get him upstairs as the melatonin kicks in. Fingers crossed.

Got him off to sleep in 30 minutes. Came down to a nice warm fire...too dangerous when Finn's about. We'll watch Your Honor and have a snuggle on the couch before I have to go up and join him in, likely, 2 hours.

Pretty dull day. How most people with epilepsy like it. Some less fortunate, every day being seizure after seizure and all the problems that can bring. If Finn could talk, I'm sure he'd join me in thanking you for taking the time to read this. Natta.

That was a really good night. Must be all those good vibes you sent Finn's way. Who wants coffee?