It was an odd trip that we took into London today. Since Elliott was 7 months old he has regularly been going to appointments at Evelinas Childrens Hospital and today was his last visit and he has been officially discharged!
Don’t get me wrong it’s a good thing that he no longer has to go there but it’s actually very odd at the same time. He began attending for, what they were concerned at the time were seizures upon waking and after 18 months and a couple of stays in hospital he was eventually diagnosed as suffering from night terrors, although there is a very long complicated medical name for them – partial arousal parasomnia
The medical opinion about Elliotts terrors is that he has been suffering with them since birth but I didn’t notice anything until he was around 3 months of age. I started to see that when he would wake up in his buggy sometimes his eyes would look really dark, his head would be shaking slightly from side to side and he would seem like he didn’t know where he was. I initially put it down to a “baby thing” or just the shock of waking up in an odd place but they continued and upon speaking to my health visitor, who scratched her head, and considering that there was a family history of epilepsy in my family I went to my GP who in turn scratched their head and sent us along to Evelinas Childrens Hospital.
For a long time we were unable to see a specialist in sleep, although the general pediatrician felt this would be the best person for us to go to, because they had to rule out every other condition first. This meant numerous EEG’s, blood tests and a 6 day stay in hospital when Elliott was 7 months old
Eventually they ruled out that there could be anything more they could test him for and I think we were at a point where we were starting to doubt that he was doing anything out of the ordinary; although it had been spotted by a nurse in hospital who declared what he was doing as “not normal” so that had made us feel slightly better
At the sleep clinic we saw one of the top specialists in children’s sleep and in that first meeting he diagnosed Elliott as suffering with night terrors – although Elliotts terrors were and still are unusual in the respect that they are erratic, he can go months without one and then have 3 in a week. The movements when he woke up and the pupil dilation were how his terrors would display themselves in a baby and the reason we had never been able to capture one on one of his sleep EEG ‘s were, exactly what I said at the time, he simple hadn’t been able to sleep long enough to trigger one.
The hope was that he will eventually just grow out of them and in the meantime we were asked to capture one on video.
A year down the line we havent been able to do this because, as I said, his terrors aren’t regular so you can’t really prepare for filming one. Also Elliotts terrors will mainly occur during day time naps and he has pretty much cut those out. Things have moved on however and now rather than the shaking etc his terrors manifest themselves in the “classic” way.
He will wake extremely distressed and crying – he may yell out for me or “daddy” and yet we can be right next to him he simple can’t see us, – he has no idea where he is and is extremely disoriented – touching him, cuddling him, even the duvet or wall touching him etc will just add to his distress – he may get up out of bed and try to go somewhere – this can continue for 20 minutes and when he comes out of it he will either go back to sleep and then wake up fine or he will wake and be very odd and clingy for around 30 minutes while he gets over it and then he will suddenly snap out of it and go off to play.
The most comforting thing that the Dr told us at the first meeting was that Elliott doesn’t remember the terror, once its over his brain moves on and it’s more distressing for us than it is for him in someway – I still get chills about him crying out in his sleep “stop, please stop, get off me” and being unable to do anything to comfort him because it would have made it worse.
Yesterday was mainly a formality I think, a check up to see what has changed since his last appointment and discharge him. The Dr, well actually professor, reiterated that he felt that Elliott would grow out of his terrors and that unless he was still having them into his teens and it interfered with things like being able to go on sleepovers or overnight school trips there isn’t anything they can actually do about them; it was just another thing that makes Elliott who he is. The only thing we need to be watching out for is that he is going to be prone to sleepwalking, something we have suspected he has done in the past, and therefore we need to make sure we lock windows ar night, cut off access to things like the kitchen.
So that’s the end of our time with Evelinas – it actually feels rather odd – I think Elliott is going to just be disappointed that he can no longer play on the huge helter skelter slide they have in,probably, the best childs waiting room I have ever been in.