We have been missing for a little while … life has been quite busy!
Connie experienced another big seizure on Monday 7th August. It was in the morning just after she had taken her medication. She was in the room alone but luckily was reading her Argos catalogue. It was the noise of the catalogue dropping to the floor that made us realise that something was wrong. I got to Connie just before the convulsions began and managed to get her onto the floor and into the recovery position before they took hold. The convulsions lasted just under a minute and it took Connie well over an hour to recover enough to be able to be moved onto the sofa. It took two of us to move her as she was unable to move her arms or legs herself.
Over the past few weeks we have started to notice that all this change in Connie is happening very quickly. We are noticing now that her speech is often harder for us to understand which could be a result of the last seizure or could be related to Rett Syndrome. The neurologist that Connie has been seeing over the past year is currently trying to rule out all the different options that could link to epilepsy so that the seizures and changes can be linked to Rett.
On 14th August, Connie saw her neurologist again. The original reason for the appointment was to discuss decreasing Connie’s medication but after her latest seizure that plan of action was cancelled. Connie is remaining on the highest dose of her current medication (Kepra) and has also started on a new course of medicine that increases in amount every two weeks. It has never been easy to get Connie to take even a teaspoon of Calpol so all these new things that she has to take can often be overwhelming for her but she is coping well.
We are in contact with Rett UK and we are hoping to be referred onto a new trial that is being completed in Bristol that is focusing on sleep and Rett Syndrome. It might be that the seizures Connie is having are linked to her oxygen levels and brain activity whilst sleeping so hopefully this trial might lead to some answers. Connie has also been referred for a test on her brain activity in Preston which she has to take in the middle of the night. We will have to wake her up at 3am to take her there and hope that when she gets there she goes back to sleep for the test – more coming on that test when we get the appointment through!
In other, nicer news, since her last seizure, Connie has celebrated my best friends wedding – we all know how much Connie loves a party. She spent the whole night on the dancefloor and a massive thank you to everyone who danced with her … I don’t think she danced with us once! Connie also spent a couple of days last week visiting her cousins in Bristol with Mum and the Aunty’s. Amazingly, Mum and Connie managed a four hour train journey which is the longest by far for Connie. It was filled with snacks and drinks of course to keep her occupied – luckily her younger cousins, Evie and Lily, were there to help out too!