Joshua has had a sedative prescribed to help to get him to sleep before or after seizures, and as it was the same potion that he had when he had his botox injections I thought that it was potent stuff. I was reluctant to use it until we were desperate and we reached that point the night before last. I was dispapointed to see that it did not touch Joshua’s pre-seizure restlessness and he paced around like a caged tiger all night long. The cause of the problem was a seizure which happened finally at 6am yesterday morning, followed by another less than an hour later which left him trembling and drooling for too long, and so I administered his emergency medication. This usually knocks him out, he has a sleep and then the brain re-sets.
It was my parent coffee morning yesterday so I left Joshua at home with his Dad, looking like he was about to fall asleep, and I met with a range of other Mums over coffee and cake. It felt odd being in school without him. When I got home at 1.30, I was shocked and disappointed to hear that he had not slept at all. He was still resisting sleep and as a result, his eyes were bloodshot. But at least he was settled, watching his DVDs and he gladly accepted the offer of ‘dinner’ too.
There were no more seizures all day, so I was optimistic that he would enjoy a good night’s sleep, allowing me to do the same. But although he asked for ‘bed’ just as we sat down to eat our meal, he bounced back out of his bedroom within 5 minutes, which did not bode well. He had a long bath and went to bed, but was too soon on the landing calling for his ‘daddy’ and ‘mummy’. I brought him downstairs again and he had some cereal and another dose of his sedative, feeling desperate enough now that he seemed to be heading for hsi second night awake.
It was after midnight before I got him back to bed and finally he settled down and to my surprise, and relief, he seemed to snuggle down to sleep. I sat in the armchair next to his bed listening to his slowing breathing and sighed a huge sigh of relief as around 1ish I finally got to bed myself. So 5 hours later, I am now awake and refreshed and thankfully Joshua is still asleep. Whether that is down to the sedative or his own exhaustion, who knows, but it is certainly just what he needed. Let’s hope he gets some reprieve from seizures for a while now….
I am up in the middle of the night as Joshua will not go to sleep, so perhaps a seizure is lurking. I have tried giving him cereal and toast, in case it was his empty stomach that was keeping him awake. But that did not seem to work and so I have reached for the prescribed sedative for the first time and I am waiting to see if it will be effective for him. I have been reluctant to use it, but we are reaching a point when we need its soporific qualities, even though, I have been warned that it tastes vile. As I write he is standing next to me, bouncing and high-5ing me, so the signs are not good yet. He is likely to stay awake until it is light and then he will go into a deep sleep, if his past form is anything to go by.
I am taking him into school with me this morning as it is my monthly parent coffee morning later. I will be on the premises, so if he does fit later, I will be close by. But the class staff know Joshua and his seizures well now and manage him well and they have the school nurse as back up. In the past, I have been wary of sending Joshua to school when he was having a bad spell of seizures, I would feel more comfortable keeping him at home with me, where I could monitor and cuddle him closely. But his seizures are unpredictable and I could spend an entire day staring at him, hardly leaving his side, and he could be seizure-free. It is a much better option to have confidence that school staff, who can take just as good care of him. It is not easy letting go and for me, I needed to see school staff in action for myself, before I could relax and release the reins. But that trust is a massive step and cannot be rushed, every parent will go at their own pace.
There is no sign so far that the sedative is taking effect, even though I have been ignoring him while typing, hoping that he would just give up and curl up asleep like a hiburnating bear. So we will try going back to bed now, after being downstairs for over an hour, and see if lying in the dark will help nature to take its course…wish me luck
This is the second morning in a row that Joshua has woken me. just before 3am, in an aggressive way: yesterday he yanked my hair and shouted ‘cow’ which was a rude awakening, and today he slapped me on my back, on the kidneys! Both are very effective and difficult to ignore, so here we are again : he has eaten some Weetabix with hot milk and a slice of toast and I have now resorted to Netflix. I know that I will get some relief tonight, as he will be sleeping in respite. It being the school holidays, we will take him there this afternoon.
Joshua was surprisingly lively yesterday, considering that he had been awake since 2.30am : so I had him dressed ready for his PA who was taking care for him all morning, when he arived at 8.30 which was unexpected, given his usual preference to sleep until lunchtime. I went to work, leaving her in charge. However, we met later at hospital, as Joshua had an appointment with Occupational Therapy, to review his botoxed wrist/fingers and check him over. Occasionally she has kept us waiting and this was no exception, so Joshua played his usual game of grinning at other patients in the waiting room or staff passing through, to see how many he could get a response from and his hit rate was pretty high surprisingly. Eventually the OT popped her head out to tell us that she was running late, and he was clearly thrilled to see her, which was surprising as on their first meeting, she had made him cry, so she has won him over after all. Gently she reviewed and re-moulded his splint and then we were on our way out.
On getting home, I unpacked shopping and settled him down and left him in the capable hands of his Dad. Bed was calling me and I went for a 2 hour nap, to compensate for the lack of sleep the night before and felt much better as usual. Naps are invaluable when my overnight sleep is so broken and really rather necessary. Yet Joshua did not sleep, he was delighted to see me back downstairs as I think he had forgotten that I was at home and was concerned that Dad was making his tea and in charge all night, the relief was palpable. I was sustained by my catnap so was able to stay up until bedtime. And then the pattern has continued again but tonight, any broken sleep will be someone else’s responsibility.
I got home from Scotland at 6pm and I pulled into the drive, Yorkshire Grandma was just leaving. She jumped out of the car to give me a hug and to tell me that my son was waiting to see me! He was indeed waiting, when I went indoors, he gave me a huge grin then went back to enjoying Pink Floyd on The Show – he was chuffed but it had just got to his favourite act. So I kissed and hugged him then went to read his school and respite diaries, to soak up the news programme that I had missed since Friday. As I was reading, Joshua decided that he was ready to pay me more attention and he kept calling ‘ Mummy’ across the room. My husband had made our evening meal and so I was presented with a plate of stirfry, which Joshua resented as he wanted me to take him in the bath by then. I promised him that we would bathe after pudding, but he stood at the snug door, switching the lights on and off, plunging us alternately into light and darkness as a very effective protest.
I gobbled my meal down, then obliged by taking him upstairs for a bath and then he watched Lion King in bed and we had a little snuggle, then I came downstairs leaving him to drift off. But an hour later, it seemed that he was still laying awake. I went back upstairs and snuggled in again, this time nodding off myself, until my husband woke me. We had a nightcap mug of tea together, then it was back to bed, where Joshua’s eyes were still open. I guess that the change of routine did not help him to settle to sleep and having managed three nights with nobody to snuggle in his bed, he was now waiting for some fuss and attention, which of course I was more than happy to give, having missed our bedtime sharing of a story and a cuddle.
So here we are back to our routine for another four weeks, which is when he next goes back for a ‘short break’. That April one will be shorter than most as we will be picking him up on Saturday night as we have tickets to see ELO in concert and as it was his Christmas present, he will definitely be joining us and just have one night in respite next month. That will be the last weekend of the Easter holidays, so he will have plenty of fun lined up as I have re-booked our postponed holiday from February half term, to go away from Maundy Thursday so it promises to be a good school holiday. I am a reluctant planner, for fear of events having to be cancelled, but I do enjoy looking at the calendar each day and seeing the fun things that lie ahead in the month and April does look to be jam-packed with fun!
Joshua had a seizure at school yesterday, having been very vocal all morning, which is often a sign of an imminent seizure . There was much excitement in class as he repeated some names that he has never said before – he named a peer who he has become ‘friends’ with recently and he named a TA too. I have seen video footage where he identifies both ‘Mummy’ and ‘daddy’ from photographs too. It made my heart melt to see the excitement in his face when he recognised my photograph then went on to identify me.
The words continued last night after school: he asked for ‘tea’, a’bath’ and a’story’. But the price that we paid for the lovely use of language – I always love to hear his deep voice booming out – was a disturbed night. He asked for Lion ‘King’ after his bath and he watched the film in bed and that is usually enough to settle him off to sleep. But as I was making our tea, I heard him moving around on the landing so he came downstairs and had some cereal. I took him into his downstairs bed, but he didn’t stay long and started his ramblings around. He went back upstairs but I could see from the monitor that he was still busy and not settling down. As my husband had hijacked the television with football, I went upsatirs to read him a story and snuggle him to sleep.
The next thing I knew, it was 11.30 and Joshua was climbing over me to get out of bed. I doubt he had slept at all , whereas I had enjoyed a deep sleep for 90 minutes. So we went back downstairs for some more cereal and we stayed up for quite a while. I am not sure when we both climbed into the downstairs bed again, but I know it was unusally light when I next opened my eyes and my pillow was covered in papers that Joshua was looking at, so I am still not sure how much sleep either of us had.
I will write this update both in his school and respite diaires as he sleepiness today is not going to be my problem, but theirs. But I have found my silver linings, of course, that hopefully he got the seizure out of the way before the weekend and that it means he should sleep well at his respite provision this weekend, and I know that I will while he is away.
On our drive home this evening, Joshua started to roll his eyes and threaten a seizure, having been seizure free most of half term week. So I kept my eye on him in the passenger seat next to me all the way home – he kept saying ‘go’, ‘bed’ and ‘home’ so I was reassured that he knew where we were heading and what he was going to do when we arrived. I unpacked the car and gave him some cereal when we got home, then changed him into his pyjamas and popped him into bed.
Just five minutes later, he was out and bouncing around in the snug, still with his staring eyes. I felt his hands and feet and they were bitterly cold – he has poor circulation – so I suggested that we take a bath to warm him up and get him clean ready for school if he was not ready to sleep. He eagerly accepted my offer and headed upstairs to the bathroom. He almost nodded off in the bath so I was still fooled.
So we both snuggled into his bed, I always share when he is threatening a seizure, so that he is not alone when the fit finally comes.I was ready to nod off as soon as my head hit the pillow but not my naughty companion – he proceeded to tug at my hair to keep me awake. After an hour of that torture, I relented and we both came downstairs. My scalp was actually sore and he was excited to have won. I gave him some weetabix with warm milk, to try to encourage him to sleep, but so far, at 2am, there is no real sign of sleepiness. I think that we both might well be sleeping with our eyes wide shut, if this goes on much longer .
We have had a relaxing half term, he has both slept and eaten well, but now he is going to return to school with blood shot eyes from a night of no sleep. He is likely to sleep on the giant beanbag in his classroom and may even have the seizure that he has been brewing all night, and yet there is nothing that I can do about any of that, which is so frustrating. Just because I can read the signs, can sense when we are anticipating an ‘all nighter’, it does not make it any easier to handle. The fact that we have had this scenario several times before, really does not help me much. I fear that it is going to be a long night….