I'm really struggling to keep up with my blogging at the moment. With Steven away at college for the last 5 months and only home on weekends.....finding time to just sit, reflect and write is a little difficult. In 4 more weeks it will all be over and we begin again to find a new normal.
But tonight I really feel that need to write and try to work something out in my head....kind of like a sounding board I guess. As you would know, Ayla started having seizures back at the beginning of August.....or did she? Finally tonight I have had a phone call from her neurologist in Queensland. He's been a little difficult to get hold of due to giving up private practice and now only practising through the public hospital system. That pretty much explains it....we all know how hard it is to get a message through that system! I spoke to his Registrar last Thursday and explained to her what was going on and today I sent through a couple of videos that we had taken of Ayla's 'seizures'. The neurologist felt that what he was watching on the video was NOT technically a seizure. Apart from the 2 seizures that we refer to as 'the big ones', Ayla doesn't experience that textbook irritability and crying post-seizure. She just goes back to sleep and then when she wakes in the morning....it's like nothing happened....she's the same happy kid and is still progressing at a great rate of knots.
Soooooo.......if it looks like a duck and quacks like a duck.....how can it NOT be a duck??? Apparently, it CAN be something else....I'm just not sure what yet.
I guess the other thing that now bothers me is where to go from here. I have a Paediatric Neurologist in QLD that I can't get in to see until October next year but whom both Steven and I respect greatly and I have a Paediatrician here in Canberra that I'm not really certain of. There's no Paed Neurologist in Canberra and Westmead is a 4 hour drive away. The Paediatrician jumped straight in and said 'Yep, seizure...here's her meds" and the Paediatric Neurologist says, "hmmm not so sure, are the meds working....No? Well, there's your answer". The Neurologist said that had we been up there he would have us do an EEG under sleep deprivation and if nothing showed he would wean Ayla from the meds and then monitor her without them. The problem is....I don't think the Paediatrician is going to be jumping for joy when we go in there and say that our Neurologist suggests something else. Can't say I blame him but in the end this is about Ayla not about his fragile ego.
I can tell you this.....if Ayla is going to continue having 'seizures' EVERY night whilst on the meds, I would much rather have the 'seizures' every night WITHOUT the meds.