Not a good week

The week started OK and really there was nothing to suspect that things would go pear-shaped.

On Tuesday, Laura had 2 hours respite booked, so as usual, she went out with the two carers whilst I dashed to Fosse Park to get a birthday present for Mick. Not long after I got back home and just before Laura was due home, the phone rang and it was Mel, one of the carers. They were on the A46 and Laura was having a tonic clonic seizure. It had been going for 1 minute and they wanted to know what to do. I advised them to carry on home but if it kept going beyond 3 minutes then they would have to stop again and give her paraldehyde. I rang a few minutes later and they were coming up to the Quorn turing off the A6 and it had calmed/stopped (she wasn't sure). So they carried on home but when they got here it had started up again and she definitely needed oxygen and paraldehyde straight away. We also called the ambulance.

It took quite a while (too long and def over 8 minutes) for a paramedic to arrive. Mick was still on the phone to the ambulance control and advised them we still needed an ambulance PDQ. The paramedic confirmed this as he had been before and knew Laura's history. It was ages and ages for the ambulance to arrive but as soon as they did they carried Laura into the ambulance and we bombed down the A6 to LRI. It was 2 o'clock in the afternoon by this time and very busy even with the siren and blue lights it took 25-30 minutes to get there. Laura was thrashing around, still seizing all the way there. The ambulance paramedic told me that they were a Nottinghamshire ambulance and had been the other side of Melton when directed to us which was why they took so long to arrive. (Grrrr, I can feel a complaint coming on, not to criticise the people who came out but the system which has allowed this to happen again - we made a complaint in 2003 and they assured me they would send an ambulance not a paramedic and would place a flag on their system).

The team were waiting in Resuc and thankfully it was not too busy. I had to convince the ER doctor to get some lorazepam into her. He was pre-occupied with taking blood and I don't think he thought she was still fitting. Her heart rate was 150+ so she definitely was. When he finally gave her lorazepam she gradually calmed down.

We went upto the Children's Admissions Unit and stayed there for a few hours until we were transferred to Ward 14. Laura was totally out of it, as to be expected. They kept her on oxygen and a monitor for the first few hours and she was quite settled.

I stayed the night with Laura but only managed a couple of hours sleep, despite it being quiet on the ward. I just cannot sleep in hospital, mainly down to the nurses chatter and laughter.

Anyway, we decided to start her on Topamax. She definitely needs another medication as the small dose of clobazam and the stiripentol just aren't enough. She has been rather seizury for a few weeks now, mainly upset by environmental triggers like heat, light, noises, patterns...

So we will see how it goes. Laura came home yesterday and was thrilled to be back! She really is quite subdued in hospital and a different child in her own environment.