Thursday, 2 February 2012

Seizures and school nurses!

Well, this week has been pretty up and down.  It started on Monday afternoon with an out of the blue phone call from the school nursing team.

I’d had to give permission a couple of weeks ago for Mini to have his height, weight, sight and hearing test with a school nurse, and it had a list of things to tick that we might have concerns about. I ticked the behavioural box, but also wrote that I was visiting the GP. So Mini had this visit with the nurse, and we got a letter suggesting we should get his sight checked as he showed some slight problems. Now back to the call, the lovely nurse was following up my tick on that form and was visiting Mini’s school the next day – would 9am be OK to meet and chat about my concerns. Now the poor woman clearly had no idea what I was going to hit her with so I did warn her about my concerns in a brief way, but she was still keen.  Feeling quite positive about this, I got on with the rest of my day.

At around 8.30pm, when both kids were in bed, Dollop wakes up. The NC goes to settle her, but then I hear Mini screaming, and the NC calling me. So, as fast as my bad back will carry me, I shoot upstairs to find Mini convulsing in bed, screaming…..asleep. He’d started convulsing whilst the NC was upstairs, and so as NC stroked his head to pacify him, he started the screams too. I picked him up, took him to our room and sat on the bed with him – still screaming, still convulsing, and then a minute or two later he stopped, and emptied his bladder, all whilst still asleep. This is probably one of the scariest things I’ve ever witnessed….He woke as I was changing his pyjamas but settled back to sleep quite quickly.
Mini has had a fit before, but about a year ago, during the day whilst awake and after being told off. This was investigated by a paediatric neurologist who questioned me about breath-holding, and it was pretty much dismissed.
Now, as Mini’s behaviour has deteriorated we knew how he would react if we whisked him to hospital in the middle of the night, so we called NHS Direct and took him in the morning. They agreed it was a seizure, and are referring him to Children’s Outpatients. He’s now fine – and I will add that he has no recollection of what happened at all.

So back to the nurse, whilst the NC got everyone ready for our trip to A&E, I nipped down to see the nurse who was fantastic! A Facebook friend and adopter had given me some names of key people in this area that could help, so I spouted these to school nurse who agreed and promised a referral to a community paediatrician (and she’d ask for the person I want who happens to have more than a passing interest in attachment), first-level mental health assessment, family support worker, parent support worker and educational pysch if needed (although we’d need school support for that and of course he is perfect there so support not forthcoming).  And she also talked about special teams that are child centred which would help if school wouldn’t support us that would force them to get involved. Feeling really positive that I’ve got some support for us now! Or at least we’re going to get further than with the GP. The nurse also confirmed my suspicions – that GP’s promise of a health visitor observation was unlikely given Mini’s age.

So a mixed bag of a week, along with some pretty shocking news from some friends, I can’t wait til this week is over!

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