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My Neuro Hero

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The Big Day9th Jun 2023
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How many times have you heard someone telling an expectant parent about how little sleep they will get once their baby arrives? The most common advice being to “get as much sleep while you can”, and “you’ll just get used to the lack of sleep” and “sleep when the baby sleeps”!!

For most, this period of restless sleep, up at several times during the night and morning, goes on for a few months, until the baby gets into some kind of a routine. Every baby is different though and there’s no right or wrong time limit, some “settle” or “self-soothe” relatively quickly and some take a little or while longer.

For us, it became evident quite quickly that Oliver struggled with sleep. Unlike other little ones his age, he was a very unsettled sleeper. Again, being first time parents, we just put this down to him being a baby, one that did not like sleep as it happens! In the first two and a half years of his life, he slept through the night two times, yep, that’s right, TWICE. And both times we had the worst night’s sleep because we were so concerned!! Ironically, I learned to love the early mornings, it was such a quiet peaceful time and I would get the best cuddles with him.

He spent the first 6 months in a crib next to our bed and then we attempted to put him in his cot in his own room. That lasted all of a week, by which point going up and down stairs several times in the early hours, sitting next to his cot, cradling him in my arms until he had gone back to sleep, desperately trying to lie him back down without waking him and get back to bed (avoiding the bloody annoying creak that decided to present itself on our landing right by the stairs to our room!), was proving too much. You could hear him on the video monitor moving throughout the night meaning we were awake most of the night too and so we brought his cot up to our room where we knew we could keep an eye on him. Over the next few months we tried everything to improve his sleep; night lights, musical toys, soothing music, white noise, ocean wave noises, a sleepy bear, lavender oil in the room, a bath before bed, blackout blinds, different blankets, a wedge pillow, propping him up, adjusting feeds, temperature, the list goes on. You name it we tried it!

We attempted sleep training, I instinctively knew the “cry it out” method would not work for Oliver given that he got so distressed if we didn’t attend to him. I started to wonder if I had spoiled him, if I had “made a rod for my own back” as many critics of parents like to exclaim! I sought professional sleep advice from various organisations, The Sleep Council, WellChild, The Children’s Sleep Charity to name a few. It was Cerebra who eventually became our lifeline.

They just got it. It was like they knew exactly what we were going through, even though we were all unaware of the neurological cause at the time. They listened, they praised us and told me what a good job we were doing and acknowledged how tough it was. Sometimes, something so simple can have such a huge effect.

We tried the “pick up, put down” method. This just made Oliver more distressed, which in turn made us more distressed! We tried the “moving chair” which failed miserably because we couldn’t even move the thing without him crying. Coupled with being a restless sleeper, any kind of movement would upset him.

As time passed, it became clearer that actually, it wasn’t Oliver not wanting to go to sleep, more that he couldn’t quite get there. Imagine a line and as you fall deeper into sleep, you eventually cross that line, and that’s it, you are in deep sleep and out like a light. Oliver couldn’t reach that edge, that line. We would be with him from 7 o’clock in the evening until 11 o’clock sometimes, trying to cradle or cuddle him to sleep. It was like he was fighting it, not because he wanted to stay awake, but because he couldn’t get to the point to give in to sleep. He would physically fight you to stop him cuddling you in, which we could never understand as he loved cuddles any other time, “planking” or arching his back to try to get out of it.

We spent the first 2 years of his life like this. We slowly retreated from any kind of social life, cancelled events, gave up hobbies because it became too much for just one of us on our own with him. At least with two of us we could take it in turns and when it got really tough we could support one another.

Some nights Oliver was so exhausted from the lack of sleep, late nights and disturbed sleep that his little body just gave in. Those nights we often found we didn’t know what to do with ourselves or would just crash out from exhaustion. This was going on when Steve was working full time and I had gone back to work 4 days a week. How we coped, how we got through it, I’ll never know. I don’t think either of us could do it again.

Around 22 months old, Oliver was prescribed melatonin. Melatonin is a hormone we all naturally make that helps regulate our sleep and wake cycle. It is well known that some children with neurological issues don’t produce any or enough melatonin and as a result suffer with disturbed sleep. If you produce enough melatonin and then take melatonin medication, it will have no impact because your body only needs a certain amount to go to sleep (anything surplus to this doesn’t take effect). Therefore, if Oliver took it and remained the same we would know he was producing melatonin and enough of it.

Well, the first night he had it, he was out sharpish! This concluded he wasn’t producing enough melatonin. To understand that and get an answer to his sleep problems was a huge sigh of relief and we finally thought we were getting somewhere!  What we failed to realise was that whilst it was a step in the right direction, melatonin only helps get someone to sleep, it doesn’t maintain sleep throughout the night and given Oliver was also struggling to stay asleep, we still had further answers to seek. Health professionals are very reluctant (understandably) to prescribe sleep medication in young children in case there is a behavioural or environmental cause. This unfortunately meant for us that our poor Oliver continued having disturbed sleep every single night L.

As Oliver got older, we eventually resorted to taking down one side of Oliver’s cot bed and placing that next to our spare bed at the same level. We would take it in turns putting Oliver to bed at 7:30 – 8 ish and lie next to him until he fell asleep, often ourselves falling asleep in the process. This way, one of us got a night off in our own bed, and the other person looking after Oliver didn’t have to get up several times to comfort him as he was lead right next to them.

We did this for another year, until he was 3, by which point we finally had answers, had an explanation as to why he struggled with sleep, because for 2 and a half years, our poor boy’s brain activity was firing at night when it shouldn’t L. So even when he did eventually go to sleep, he wasn’t getting restful sleep. All this activity would have given him strange sensations before sleep such as blurred vision, strange taste in the mouth, anxiety – these are known as “auras”. Most individuals will have an “aura” before they have a seizure or have some kind of seizure activity (meaning they are then at risk of having a seizure). We now know Oliver struggled to get to sleep because of the lack of melatonin and he also didn’t want to go to sleep because he was frightened and sensed he would have a seizure. Thankfully by introducing epilepsy medication, whilst didn’t cure his disturbed sleep, it did mean he was finally having restful sleep for the first time in his life. This will unfortunately fluctuate as his epilepsy does but for the time being it is controlled (see The E Word blog for more details)!

It is so bizarre because both me and Steve have always subconsciously felt it wasn’t right, it wasn’t safe allowing Oliver to sleep on his own. Hearing how kids his age were going to bed and sleeping right through, how they had a great routine made us feel so guilty we were doing something wrong. It’s so hard to put into words, we couldn’t even explain why, we just knew what was best for Oliver at that time.

We had no prior knowledge or real experience of parenting, we had no knowledge of anything serious being wrong, no knowledge of what Oliver would eventually be diagnosed with, the implications or the impact.

And thank god we did what we did, because we didn’t know he would go on to have Epilepsy. We didn’t know he would have a seizure at night time (thank god I was sleeping next to him when he had his first one or god knows what would have happened). And we didn’t know for some time, even once we were told he had Epilepsy, that he would be at risk of SUDEP (Sudden Unexplained Death in Epilepsy) because of the type of seizures he has and because they happen in his sleep.

Imagine not having restful sleep every day, for nearly 3 years. Topped with having physical difficulties, lots of physical therapy, everything taking more concentration and effort to achieve, on such limited sleep? I’m not surprised his poor body had had enough. Sleep is so important, so vital for children like Oliver. I’m just so grateful he now gets the rest he so rightly deserves to give him a fighting chance in life!!! xXx

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