Our stay in hospital

Well, it's been a long week of which half the time I haven't known what day it is or time! So, I haven't had the opportunity to update hallie's blog.

She was admitted on Monday 17 December to Sheffield Childrens Hospital. I had fed Hallie her usual bottle around 2pm and we were sat watching tv having a cuddle when I noticed Hallie wasn't kicking her leg normally, it was rhythmically twitching. I didn't panic as I have been waiting for this for the last 7 months (although I must admit I wasn't expecting it all to happen the week before Christmas!) I lay Hallie down on her change mat to have a proper look at her body. She was very happy in herself as she lay on her mat watching me. The twitch moved up the left side of her body and into her left arm and hand. I recorded this on my phone as evidence just in case she stopped before the ambulance arrived. I phoned 999 and explained what was happening saying my baby girl was having a seizure and that she had Sturge weber syndrome and it was her first seizure. The ambulance arrived within a few minutes and I explained all this once again to the two medics who had never heard of SWS surprise surprise and I didn't want them to think she wasn't fitting. But, even though the seizure was stopping, they could see her left side was completely paralysed so said they were going to take her in with the blue lights.

At A&E Hallie continued to fit every few minutes. I was so unbelievably worried because at this point I didn't feel they were taking the situation seriously or treating it with urgency. Hallie was fully alert and wide awake throughout her seizures - she was responding and moving her eyes following the doctor's light. Because of this, they thought she was okay and she was coming out of each seizure after a few minutes. I didn't count but I would say Hallie had approximately 10 to 15 seizures in the two hours she was in A&E. finally she was given a drug (I cannot remember which one) and she was transferred to the neuroscience ward.

Hallie was given Carbemazepine and a loading dose of sodium valproate to kick start the levels of drug in her system. The nurse explained that because little ones' livers work so efficiently they tend to get rid of the drugs really quickly out of their system so need high doses to keep levels up.

Hallie kept fitting I would say 3 to 4 times a day, each fit lasting 5-10mins - the neurologist visited a lot and I had an emotional conversation with him about my concerns that he wasn't treating aggressively enough. It was so difficult because on the one hand I didn't want my baby girl to be pumped full of all these chemicals but I also wanted to ensure she was getting the treatment she needed to prevent brain damage. The nurses were a little stubborn when I kept insisting SWS seizures needed to be treated differently to other epileptic seizures. They kept telling me they had treated many patients with epilepsy over many years to which I replied "how many children have you had on this ward with Sturge weber syndrome?!"