As mentioned before, JD has trouble swallowing things and this is only getting worse. Her medication is all in liquid form because she struggles getting it in with tablets. She has a syringe driver with steroids which dispenses the medication over a 24 hour period. However, up till yesterday she still had to take her anti-seizure medication orally. I would draw the liquid from a bottle and squirt it in to her mouth and beg & pray for her to swallow it. As she needed 4 syringes in total, it had become a complete struggle and I was getting frustrated with worry about not getting the complete dose in her. I am sure JD was getting annoyed and upset with me trying to force her to swallow.
So a solution was concocted. We were offered a number of different options. One of them was to give JD a suppository with the anti-seizure stuff 3 times a day. No thanks. Another option was to give her a different drug in smaller doses 4 times a day. This would not really solve the swallowing issue so this too was rejected. That left the option of inserting a second syringe driver with a drug called Midazolam. This is an anti-seizure drug which is also used as an anesthetic. To put it simply, it prevents seizures by making people sleepy.
In anticipation of this change in medication, I had not given JD her full dose of oral medication in the morning, preferring not to battle with her. Unfortunately, JD had a seizure during the day as the nurse ran late and only set up the syringe driver late in the afternoon. It was only a small seizure so I wasn’t too worried.
Then, later that evening, she had another one. I felt a bit sorry for her two visitors who were sitting at her bedside. It must be very upsetting, especially as they had not seen JD for about 6 years.
I checked with the evening nurse to see what to do if there were any further, larger, seizures and then I went to bed. But just before I turned off the light, I checked the new syringe driver with Midazolam. And I noticed it had actually not dispensed any drugs at all since the nurse set it up in the afternoon! No wonder JD was having fits, she had no medication for a whole day! I rang the excellent Primecare Rapid Response team and they sent a nurse with a new syringe driver and it was all sorted. Phew!
It made me feel a lot better to know there was a clear cause for JD’s seizures. I would have been much more worried & upset if the seizures happened despite having new, stronger medication. JD and I slept through the night, the two syringe drivers buzzing away reassuringly by JD’s side.