Just a short and sweet little post, before I forget to journal this weeks events – for myself as much as anything else!
If you have been following the blog, you will know Luke’s sister had an EEG done just to rule out any epileptic activity and I am delighted to report that the EEG was all normal and as was my gut feeling I think the past 5 months have been quite difficult for my little princess and this manifested itself in some quirky movements/twitches.
Luke had a turbulent week, we ended up taking him to our local hospital last Monday as he was having cluster seizures – never again! Our closest hospital doesnt have a Paediatric Neurology department so they essentially didn’t know what to do with Luke – and of course when I woke him up to take him to hospital he stopped seizing. So what do you do with a child that was having cluster seizures observed by mum but isn’t doing it now??!
We got to the hospital at midnight, he was seen by the A&E doctor, she took his full history, medications etc and then at one stage she mentioned keeping him under observation for 4 hours before admitting him – my face was a picture and I just said “how are you going to observe nocturnal seizures when he is here awake? – and regardless I am not keeping him awake all night I will just take him home!”
He was admitted and given a bed at 3am and he had around 5 seizures from that point, but not close enough together to be considered clustering. The Paediatric Consultant came to see us around 11am – and they called his hospital around 12 midday. 12 hours in the hospital before his Neurology Consultant was even notified he was even there. Then by the time his Consultant comes back to the hospital at around 4pm we were told to go home and increase his Vimpat from 75MG x2 a day to 100 MG x2 a day. I was very angry – such a waste of my time, Luke was exhausted with the disturbance to his sleep and plus in Ireland we are charged €100 for attending the A&E and we achieved absolutely nothing!
However when we got home, Luke’s consultant did call me and confirmed that he was happy for Luke to come down to Temple Street Hospital (where he has been admitted previously and his neurology team are based) if I was uneasy and that he was apologetic for the lack of communication between the two hospitals. I am not afraid to admit that I can be incredibly direct and I told him never to suggest I take Luke to that hospital again, the doctors are lovely and considerate but in my opinion completely ineffective and I would rather drive the extra 20 – 30 minutes to Temple Street in the future – unless of course it was an emergency situation.
On the plus side, Luke’s Consultant has now given me the go ahead to give Luke Buccolam if the Cluster Seizures return – so at least I am not completely helpless should it occur again. He has increased the Vimpat (even though it is an effectively failed AED for Luke) to try to buy some time whilst we are increasing the Lamictal over the coming weeks (a very painfully slow process unfortunately). Since we have done so Luke had a couple of good nights with one or no seizures overnight, but then this jumped again to 11 in 24 hours over Friday night/Saturday morning. We must persevere and we live in hope that one day the seizures will have burnt themselves out and one of these medications we are feeding Luke actually starts working!!
Still waiting on the PET Scan btw, so no update on whether Surgery is going to be a viable option for Luke, but hopefully we will know more soon
Bye for now,