Did I ever say how much.....

I hate epilepsy????

We deal with a lot of health issues with our children but I think the epilepsy is the one I fear most. Partly because i just dont understand it...partly becuase others in my daughters life dont recognise it, and partly because the drugs used to treat it all carry horrible side effects and risks of their own.
I find it a little disconcerting when I have described Rosie'sseizures in minute detail toother care givers yet they can say they have never seen her fit....they have seen her doin the things I have described as seizures...but they have not seena seizure???

More disconcerting was when she was on Children's ward ill. A nurse entered the cubicle asRosie was in an absence siezure, eyes wide and staring oxpression no response laid flat on her backand the nurse asked her what she was looking at??? I responded that she was fitting and the nurse replied no sh'snot she isn't jerking! SIGH!

Anyway, Rosie started the day in nonconvulsive seizures....really agitated and anxious and throwing herself and anything she touched to the floor, lashing out at anything that moved....ie me! I gave her a dose of the rescue meds we have for this seizure type and 30 minutes later she was settling. I think there could be an association with sluggish bowels but I am not certain...she was certainly full of wind and I was able to draw over 120 mls of air from her stomach. Having managed to dress her I left her carer trying to encouage her to eat breakfast whilst I showered Christina and washed her hair, supervised Jonathan getting washed and dressed and cut his toenails....I have never seentoe nails grow like Jonathan's do. By 7.45 when the school bus pulled up Rosie seemed fairly happy and settled and so ooff she went to school.

Eve was sounding a little croaky and was deffinitely better turnd to her left side again, but was happy and keen for school, soeveryon else dressed, animals fed, bagspackedand the phone rang...My frined asking if we could collect her two boys from school as there was no Bench Ball after schooldue to the teacher being ill. Yes no problem she would collect them from us at 4. So the rest of the childen were delivered to school and I returned to try and get a handle on some of the paperwok that is threatening to overrun the house!

Twoitems dealtwith and the phone rings...Deputy Head from Rosie's school. they are really very concerned about Rosie. She seems really anxious and agitated and is really lashing out at anything that moves!

Me!:-Oh No she is fitting again!
teacher:- Oh really is that what it is
Me Yes, this is her non convulsive seizure I describe to you.
Teacher oh really!

me:- Yes she wokelikethat and I have given her her rescue medcineand she seemed to settle.

Teacher, ah yes, we havelooked that medicine up on the internet and the side effects can make her act like this!
Me:- Yes well all antiepileptics have the potentiall tocause agitation, but she was doing this when she woke from 4am ish. Shesettled a loafter i gave her the medication, this is more seizure not reaction to the medicine,

Teacher:- oh!

Me:- I will ring the Hospital and get advicefrom her consultant and ring you back....( thought to self...there are more of them than there are of us she can stay there if her breathing is not compromised!)

Soi did ring the peads secretary...she pomised to pass the messaege onand Dr was on the ward so would ring me back later that was 10 am, it is now 10.58 pm and I am still waiting! I digress.
i rang schol backand asked if they would check if sh had had her bowels open,and also if they could check her temperature.

I got acall back about 15 minutes later....no BO...and they dont have a thermometer!

Phone calls back and forth between me and school but nothing back from hopital, Rosie started to calm down around 1.30.
At3pm David set off to collect Joshua and Christina, he was then going to the DIY shop for some wood and would collect milk and fly spray, ( I haveommited to tel you about our plague of flies), from the supermarket. At3.20i suddenly remembered the first phone cal thi morning and realised we had not discussed David picking the boys up...wouldthey be with J and C or would they be forgotten? I anxiously dialled school but no answer, I hungup and rangbackfour times then left a mesage asking for them to callme back! I was mortified how coulwe forget them? Should i getin the other car and drive down and check. Notreallya possibility until Jonthan and Rosie were home.
I had to wait it out....shouldi text my friend and suggest she went straight home to check the boys had not walked home...no i would wait till Jonathan and Rosie were home and then decidewhat to do.
Rosie came home on transport giggling and with a full nappy! On CLoser looking her eyes were all over the place and once out of her chair she was not very well coordinated and was a bit blue peripherally. David arrived whilst the school bus was still folding ramp away...Icouldn't seeif the boys were in the car or not...I had to getRosie indoors so dealt with her whilst peaking over myshoulder as the car doors opened...phew they were here! As soon as I had spotted them their mum arrived! I immediately confessed myfears and anxiety...she laughed! She said the boys knew they were coming here and would have just followed J and C anyway!

Rosie was indemanding mode! She was also starving! carer arrived and took over her tea whilst I tried to ensure food was organised for the others. Joshua had a meeting at school about his upcoming residential weekend. Rosie was still causingus concernand I really did not want to go out, However, Joshua needed to be at this meeting and we needed to know about the weekend. David and the carer were more than capable of looking aferRosie, I tokmy mobile just incase and we set off. we were less than an hour and I was glad I went,moreover they coped at home!

9pm and Eve has decided it isher turn forsome more attention, Darth Vader is back...well part time, sheis ither making awful noises with each breath or she is not taking a breath! no happy medium. So I am sathere silncing the SATS monitoreach time it alarms and wondering at what point I decide to go to bed or decide to ring the ambulance! I am reminded that the housing officer is "often forced to make diificult decisions inthe most difficult circumstances"....do you think maybe I should ring him for advice? I think I need toresignmyslf to sleeping downhere tonight. I just cannot be bothered with up and downstairs to her all night. Now had we gotthe through floorlift installed and the joined up upstairs, i would not be struggling would I?

OK so last week Eve was onthe ward for her breathing issues, this Wednesday Jonathan was causinghavoc in outpatients with his most peculiar and puzling rash. Today we have been juggling Rosie'sseizureswith more Eve breathing Issues...just need Joshua to jazz up his joints or his Asthma and we could have full house in Peadiatric care! (Joshua don't you dare!).

We have the Social Worker coming tomorrow to tick some more boxes we dont fit in! will I be awake or asleep at home or on a ward somewhere? Which children will and wont have gone to school? And will we still be plagued with flies?

I do not know what the future holds but i am gladI know who holds the future!