Next choice of sedative………. a hammer!

It’s now day 9 of what feels like a prison sentence. The last few days have been horrendous. Each day Daisy has not been able to settle day or night, waking for good at 1am, wandering up and down the stairs, unable to sit still, constantly punching her head, throat and nose unimaginably hard and relentlessly pointing to blank walls whilst groaning and whining. This has been without doubt one of the worst periods of post ictal activity EVER, and we have been through many.

Yesterday afternoon I went to collect my hubby from the airport, he was coming home, Yippee, help at last and someone sane (ish) to talk to. I thought the drive would calm Daisy so in the back of the car she was strapped (I chose the back as I didn’t want her to distract me with her continual punching) and off we went on our relatively short journey. OMG, 5 minutes into the trip, just as I joined the motorway she chose her moment ……… to strip. All I can say is thank goodness I have tinted rear windows. Daisy in her confused state managed to get trapped in her own dress, all I could see in the rear view mirror was her head and body hidden in a polka dot dress, arms in the air. She was getting very, very agitated, she wasn’t the only one. I was stretching backwards whilst trying to steer in a straight line, to try to help her un-trap herself but I couldn’t quite reach, then all of a sudden RRRRIIIIIPPPPP, off came the dress, now resembling a rag. She had built up quite a sweat and was quiet for the next leg of the journey but not before she she had removed her vest with relative ease and had decided her shoe would be best placed to join me in the front striking the windscreen en route. We arrived, in one piece, and whilst waiting for my knight in shining armor (said in jest) to appear I just took a moment to sit and look at Daisy in the mirror, naked, envious boobies on display, pointing to the headrest and mooing, how is this happening to me, us?

I was hopeful, having spoken to her consultant in the afternoon, that by increasing a hypnotic drug (chloral hydrate) to a dose that would knock a horse out, that we would enjoy a silent night, no wakings, no bed rail rattling, just silence. Giving the drug posed it’s own problems, prescribers never consider this, how do give large amounts just before bed, along with other drugs and try to dilute it to lessen the awful side effects, in short, nearly impossible but impossible isn’t a word I use so off to battle armed with four 20ml syringes I went, I won.

Daisy woke five times between 7 and 12 then 1.15am, yep, she was awake for yet another day of torture.

Daisy 1, medication 0.

Bloody cappuccino…….

So, day 5 of our current nightmare.

Daisy was given so much medication last night I’m amazed she woke up! 4am was her lie-in over with and I was relieved that I’d gone to bed before 8pm. It’s hard to believe that I’m actually happy with her waking so early but after three days of being up at 1am, 4am felt like half the day had gone.

Today has been mixed. She was beyond manic for the first three hours, jumping on bed, sofa……..not unusual you might think but Daisy is a 98kg 16 year old! She was laughing hysterically at nothing, punching her head, throat and nose and running, stripping, throwing anything she could get her hands on and continually ripping any nappy I dared to put on her. This did cause me a big problem as she took the opportunity to poop on her clean bedding and then run around upstairs, I’ll spare the details.


After the bath she calmed for a bit until there was a knock on the door. A guy came to do a report on our kitchen, long story. Out came her horns and I have to say I did chuckle to myself when she ‘charged’ full pace at this poor 6’2″ 20 stone man, he looked terrified! He was a great source of interest for Daisy and I’m sure he made up all the measurements as he was gone in a flash. Flash……….yes she did!

As I’m slowly going mad with my own company I thought I’d take her for a drive, go for a walk and get a Starbucks. Mistake. Queuing at the drive thru she suddenly took a turn for the worse. She went bluey grey, started trembling and then continuously punched her nose incredibly hard, it was like a bloodbath. I was trying to clean her nose and calm her shaking just as my cappuccino appeared through the window. I reached over with blood on my hands, apologizing I asked for a serviette and just grinned at the poor guy, who knows what he thought, probably took my registration and has reported me as we speak.

I abandoned all hopes of wheeling her round the barrage and drove home.

She has now settled again and thanks to good old MacDonalds has eaten for the first time in five days which means I can also give her ibuprofen for what must be a very sore snout.

I have no idea how long this phase will last, it will end………probably just in time for her dads return on Saturday!

Easy like Sunday Morning.

Seizure day, tick.

Post-ictal day, tick.

Lucid, lethargic day, tick.

Post-ictal psychosis day, ARGHHHHHHHHHHH!

Today, may possibly go down in history as the worst day, EVER, and it’s only 4.30am. Carers have cancelled on me so bring on the day.

Daisy woke at 1.35am. I thought I had a plan. Medication to sedate her was by the side of the bed in preparation for her awakening. Jumping on her to syringe it in I thought I’d won. I popped her tv on (Postman Pat 2 hour dvd) and lay her down, snuggling her into her pillow. The sound was so low only a dog would hear it. Lights off I went back to bed so that she wouldn’t be distracted by me snoring, if only! Within a minute the bed rail was rattling. Within two she was attempting to climb over said bed rail. Within three THUMP, she had.

I could tell by looking at her huge pupils that something wasn’t right, I’ve seen it many times, my heart sank. Great, what else can be thrown at me. She stripped, ripped her nightie, punched her nose that was already congealed with dried blood, threw her drink cup that I’d offered her, clapped manically all in the space of a few minutes; all this whilst laughing in a scary way.

Post-ictal psychosis shouldn’t occur in children, trust Daisy to be an exception. There is little research into it and probably none regarding mentally handicapped children but believe me, it’s horrendous to deal with. I keep a bottle of haloperidol for such occasions and have administered a low dose, but so far it’s not doing its job. My only fears today are that 1, she really hurts herself by punching her nose so hard or 2, I really hurt myself by jumping off a cliff!

Easy like Sunday Morning!

I wanna be weak…….

You can always tell I’ve been awake for hours when I start wittering on about inane and uninteresting things…… is one of those days sorry. Best stop reading now.

Yesterday wasn’t good. Daisy wasn’t on the same planet as the rest of us, she was locked into her silent world with little movement (apart from her bowels ……. many times!). Sleep was alien to her the night before so I had only managed three hours sleep in total which doesn’t do my reflection much good, I looked horrific and any small child would have run screaming from me.

We started the day half a day before the rest of the planet and by 5 am bedding was changed, washed and drying, Daisy was zoned out on the sofa just staring at nothing, but not letting go of my hand……arghhhh, and I was watching a catch up of Trauma (I have to say, 3 hours of my life were wasted with that, shite ending). The day didn’t really improve. Daisy just lay like a little (cough) dead thing, not eating, drinking or interacting and to make it even worse bloody Davina McCall had replaced Holly on ‘This Morning’, shoot me now.

By 3pm I thought it best I try to bath Daisy. I prized my hand from hers and ran her a lovely bubbly bath. It took about 45 minutes of coaxing to get her to follow me and she was walking like she was on the moon, but we got to the bath and it was much more pleasant sitting next to her for the following hours.

Wine time, I mean Bedtime…….whoop whoop!

I think I fell asleep about 8.30pm, not sure, but 1am was the next time I definitely remember seeing on the clock. Surely she will go back to sleep? In the following hour I administered a sedative, to Daisy not me, changed her nappy, put tv on, turned it off, screamed, swore, screamed louder, swore more……. in fact, I half expected the police to break down my door, surely someone heard me scream? Course they didn’t, we are alone. They say sleep is for the weak, I wanna be weak……….

So today, let’s see, she’s a bit brighter looking, she’s sitting rather than lying down, she’s holding her iPad to her ear listening to Fireflies on repeat, she’s not eaten or drunk anything but it’s early so I’m hopeful. She is still silent but giving me the odd smile. Oh, and I haven’t smothered her! I do wonder if her insides are dissolving though as there can’t possibly be any more nappies to change, but they keep on coming.


She sleeps………

I was woken at 4.45am by the awful sounds of Daisy suffering a seizure. I bolted out of bed and she was face down into her pillow, blue lips, gulping for air. I dropped the bed rail, straddled her and pushed the pillow deep into the bed so that I could remove the dummy and let her get some air. It lasted about three minutes but felt much longer. I lay next to her and fell back to sleep.

5.50am it started all over again. This time the seizure seemed much longer but probably wasn’t however the shaking and groaning was very alarming. I held her hand and watched her.

9.05am I decide to administer emergency medication to halt this next seizure. She sleeps.

10.30am, you get the picture……….

We are now on the fifth seizure and each one has increased in intensity. It’s 2.35pm and Daisy hasn’t woken yet. I’ve tried to rouse her by talking and singing (that’s enough to rouse anyone!) but she doesn’t want to join the world today.

I’m hopeful there will be no more, I can only give one more dose of emergency medication so I am praying to a God I don’t believe in that she will wake soon and ask for yum yum. I fear it’s going to be a long day and night but I know she will recover, she always does, this time it might take a little longer but she will soon be driving me to distraction once again, of that I can be sure.

So, I’m sitting next to her on her bed, with a hot water bottle on the base of my spine (a back ache as a result of trying to change her nappy) ordering clothes I don’t need and reading stories regarding epilepsy that I shouldn’t be reading. Life was never meant to be like this. Today it sucks.

It’s been a long time………

It’s been a while I know but you really would not have wanted to read what I had to say for the last few months! It’s been very difficult, emotional, tiresome but hey, shit happens and now we must get on with our lives.

Daisy is amazing. Don’t get me wrong, she has not sprouted angel wings in the last couple of months but what she has done is shown what an incredibly strong character she is. The incomprehensible pain she suffered last year is forgotten in her world. She has forgiven me, I can see it in her goofy (bad choice of phrase) smile. Every day I’m reminded as I stare at her lost looks and I feel so sad but what’s the point, I can’t magic her teeth back, they have gone and she didn’t even have a chance to pop them under her pillow for a pound off the tooth fairy (not sure what the going rate per tooth is nowadays but if it’s more than a pound per tooth, wow, it’s just as well that b****h of a dentist didn’t give them back to me!) Damn, I knew my bitterness would slip in.

So, what has changed? Well, Daisy has lost quite a bit of weight but I guess if you have 21 teeth butchered from your mouth and don’t eat for nearly a month because the pain is so intense weight loss is inevitable. Her seizure pattern has increased, oh and she looks like a little gummy old lady! Unfortunately her sleeping pattern hasn’t changed and she still insists on torturing me with rattling her bed rail at 1, 2, 3am, in fact I have to say that on certain nights it’s actually been her lack of teeth that has saved her life for if she hadn’t given me a toothless grin I swear she would now be in the great big dentist chair in the sky!

Does Daisy care about looks? Does she heck. This blissfully unaware teenager just gets on with being Daisy but me, being the selfish individual that I am, well I’m devastated and I doubt I’ll ever get over what has happened to her. Everyone tells me you can’t tell until she smiles but they lie to be kind and many would argue this, but I’m not daft!

So, here we are, 2018. Another year and who knows what will be thrown at us? Who knows what will test my patience? What I do know is that whatever happens Daisy will remain un-phased. Me, assuming my liver holds out, will do my best to care for this incredible girl who on alternate days I want to love and then murder. She tests every part of me but ultimately she needs me so I will fight for her, what has happened isn’t over but so far as my tedious posts go it is and no more will be said……….famous last words!

Said it before, I hate Mondays.

I’ve invented a new word. It’s only ever going to be relevant to a handful of people, well to be precise just me (and my husband, very, very occasionally).  Drum roll please……….the word is ‘Roo-lag’. I think it should be defined as ‘a physiological condition that affects your ability to function in a pleasant, calm and tolerable manner due to constant sleep disturbance and ridiculously early mornings’. Symptoms include irritability, excessive eating (due to being awake for 20 hours out of of 24), ugly black circles around eyes, self loathing and complete child loathing. Treatment, none found as yet. Clinical trials ongoing but a possible solution could be in the form of a bullet right between the eyes.

I shouldn’t be nasty, it’s not Daisy’s fault but it’s so difficult to be nice when tiredness envelopes every part of me. I think this episode of sleep disturbance is due to a tooth problem. I may be wrong but Daisy has not been eating well for quite a few weeks (hasn’t lost any weight though). She is booked in for an ‘urgent’ tooth examination under GA but that ‘urgent’ request was three weeks ago and as yet there is no sign of a date. Daisy isn’t like any other child. She can’t go to a dentist and just open her mouth for a peek at her pearly whites, no, my bloody child needs a GA for a simple procedure. This will be her third one for tooth examination, it’s horrendous but has to be done. She can’t indicate pain, she can’t tell me if her mouth is throbbing or her throat is hurting. I have to guess by process of elimination. It’s all guess work. Sometimes I get it wrong, mostly I get it right.

She was up at 4.30 today. Breakfast has been served since 5.30. Normally it would be demolished in minutes but today it is sat there, laced with some medication. It remains untouched. Quavers will be offered soon, I’m holding out but inevitably they will be placed on the platter in the hope her appetite may trigger. She doesn’t appear unwell, she’s giving me nasty glares and I’ve had some high pitched screaming from her so I’m now going to attempt to dress her and medicate her, I have a feeling this isn’t going to be easy this morning.

I have to go, she’s just kicked her banquet on the floor. She will be lucky to make it to school……….alive, arghhhhhh!