I heard Joshua coming out of his bedroom at 2.30 as he often does. Only instead of letting me put him back in bed, we had a tussle at the top of the stairs with him insisting that he came downstairs. I agreed and thought I would give him some weetabix then take him back to bed. But Joshua had other ideas : he needed changing and while I was doing that, he began to have seizures. So he must have known and felt them coming on and he knew that he did not want to be alone.
I gave him his Weetabix with his daily morning medication, but the seizures continued and so at 2.45 am, I administered midazolam to stop them. He has this emergency medication inside his cheek, next to his gums where it is absorbed quickly apparently. It takes around ten minutes to take effect, so I sat with him, reassuring him, until gradually they subsided. It is now an hour later and Joshua is lying on the settee, occasionally closing his eyes but not really asleep and I have a cake in the oven. Once he falls asleep properly, I will lie on the other settee and try to grab some sleep. It is in this situation that I am relieved that I no longer work. It was hard to work 9-5 after being up all night with Joshua, but now that I have retired, I can grab some sleep later in the day hopefully.
Epilepsy is challenging to live with : today will be wiped out for Joshua now. If he had still been going to school, or had started daycare, he would not be going today now. He will have a drowsy day on the settee I predict, but we have no plans and no need to leave the house, so can accommodate however he is feeling.
I belong to on online support group for parents of children with hemiplegia and yesterday I responded to a stressed mother whose daughter had just been diagnosed with epilepsy. She was not having many full tonic clonic seizures, but often complained of headaches and feeling sick and the doctors wanted the mother to record how often this was happening. She was devastated that she had missed seizures by not recognising what they were, so she was feeling overwhelmed like she had let her daughter down. I tried to reassure her that there were many different types of seizures and at least her daughter was verbal, so could tell her how she had been feeling. I also suggested that the hospital might run a video EEG where the child is wired up to electrodes and stays in a room for a couple of days so that they can record what is happening in the brain, with what can be seen as happening to the body. At least if she knows such technology exists, she can ask her local hospital if it is appropriate for her daughter. These groups are invaluable as there is usually someone who has a shared experience, who can offer advice or just empathy even. I sought the advice of parents whose children had undergone brain surgery – hemispherectomy – for epilepsy, as part of my fact finding when we were trying to decide whether or not to go ahead. There were no bad outcomes that I heard of and some had achieved being seizure-free as a result of the surgery, which gave me hope.
It s now after 4am and Joshua is asleep, snoring on the settee so I am going to try to get some sleep too while all is quiet…..