On March 18th, everything changed in the Halpin Household. Connie experienced her first seizure (Connie’s First Seizure) and since then has experienced two bigger seizures (Seizure Number Two and Seizure Number Three). Now our life is one big circle of watching Connie and giving her medication.
Connie was given Levetiracetam (known as Keppra) in December 2016 after we noticed that she had started to make a lot of jerky movements. After each seizure, her medication has been increased and she is now on the highest daily amount possible at the moment. We have seen some side effects of Keppra. Connie has mood swings where she gets really worked up and aggravated and quite often has a loss of appetite. Balance is another side effect we have noticed – Connie is extremely wobbly now and cannot go up and down the stairs on her own.
We have a lovely epilepsy nurse assigned to us now called Steph, who came to visit Connie when she ended up in hospital after seizure number two and she has done two home visits since then. She comes to make sure Connie is okay and also to give us plenty of reassurance about what we do when Connie has a seizure. At the moment she is set to visit us every 4-6 weeks and we are to contact her if/when Connie experiences another seizure.
At the beginning of June, Connie finally had the appointment we have been waiting for since March with her neurologist. Even though Mum and Dad went with lots of prepared questions, the only real information we received is that Connie’s medication is to be upped again. He also put Connie’s name down to undergo a test where he will monitor her brain activity for three days to see if she is having smaller seizures more often than we are noticing.
The big seizures we have seen are called “tonic clonic” seizures (the convulsive type) but now that we have spent a lot of time trying to find out as much as we can, we are noticing that she might be experiencing smaller seizures a lot more often. Every now and again throughout the day, Connie goes blank and focuses on a spot going into a sort of trance.
Who knows what is going to happen – for now the focus is on getting Connie’s medication to the right level for her (which could take a lot of trial and error) and getting ourselves as clued up as we can be for Connie’s sake so we can look after her properly. Connie is still sleeping with Mum ( or Dad/Sister if Mum is away) but we are currently sorting out putting another bed into her bedroom so that we can all rotate who sleeps with her when she needs us. I think she will be gutted to leave Mum and Dad’s lovely king size bed but very happy to have her bedroom back! Her teddies have definitely missed her!
As always, we will keep you posted!