Category Archives: New post

Quote

Active

I go through phases with blogging.

Specifically, I go through a cycle.

Around this time every year, I begin blogging again in earnest and participating in bloghops and linkies.

The last three years have been the same.

Enthusiasm wanes around the end of the summer then as winter approaches and I drift into my funk, I lose blogging and some parts of whichever community I’m currently fondling.

During my active phases, I tend to blog in multiple places (the OCD likes to keep things very defined) so here’s some links, in case you’re interested:

Muddled manuscript – I keep fiction and terrible poetry here.

Kristina Writes – here lies writing about writing, encouragement, NaNoWriMo tips and a hint of madness. I try to update this one once a week with what my writerly alter-ego is doing and supportive words for other writers who are struggling on that lonely and often heartbreaking path to publication.

There you have it.

Medication potential

When L began seeing her neurologist, we were told that medication for her type of epilepsy was rarely called for.
Since L has been having frequent Magic Hand episodes, she is now back under review (which is why we took her for another EEG.)
Each time L goes to see her head Dr, a summary letter is sent to us and the health centre. The most recent one came today.
I knew medication was a strong possibility, but this letter indicates that medication is the next step for L. We’re still waiting on the results of the EEG.
I don’t know much about meds for epilepsy, but we were warned that they can affect behaviour and personality. She could potentially become more aggressive as a side-effect, although it’s hard to tell whether the changes are because the discharges in  her brain are being suppressed or because the meds are causing a change in the delicate balance of chemicals.
Knowing that my own delicate balance is a little precarious and there is depression, anger issues, anxiety on my side and Asperger’s on both sides of her family, the potential frightens the poop out of me.
Still, if it means she can have as normal a childhood as she can get (with us as parents, it’s unlikely to be that normal!) we need to give it a go. 

Epilepsy update

Hello again.

It’s been a few months, hasn’t it?

Anyway, I’ve been updating some other blogs and having a break away from writing but now I think it’s time for a good old brain-fart.

L was diagnosed with epilepsy 2 years ago after a traumatic 40 minute tonic-clonic seizure. She did a three day stay on hospital where she had an EEG which (at that time) had indications consistent with Benign Rolandic Epilepsy in Childhood (BRE, BREC). She had an MRI just to make sure and when that came back all normal, her neurologist began a monitoring program.

The day before her next consultation, she had complex partial seizure. We did an ambulance journey and spent four hours waiting in A &E majors ( the bit where they have all the seriously ill patients which is pretty gruelling) to be told to go home and update her consultant the next day.

She was then put on six monthly monitoring where she would be discharged if she had nothing after a year.

Well, the first six months were fine, then she started school. We thought “magic hand” – she describes it as her hand moving on its own and says its tingly – was an aura, however when she started to get magic hand more than a couple of times a week, I began to wonder if this was far more significant.

I brought it up with her neuro at the last consultation and she said it is likely to be partial seizures, especially as its generally accompanied by a short period of confusion, clinginess, or feeling strange.

We are now into a new ball game with the epilepsy. No, it’s not severe, but if magic hand is seizure activity, she has had probably 20 seizures over the two year period and seems to have them in clusters when she’s tired. This could lead to the need for medication and that’s a pretty scary thing as it could potentially change her personality.

Anyway, as part of this new discovery, she has to have another EEG in the morning. The last one, though indicative, was inconclusive. So this time I’m hoping for some answers. It won’t change much, but it’ll better prepare us for the future.

The girl

My eldest has always been a challenge. She’s made me face up to a lot of my past and driven me to points of frustration I didn’t know I had.

We knew she would be special. When she was born, she had a tongue too big for her tiny mouth, so it poked out, and a fontanelle which was outside the average size. She was checked and deemed ok, but I was so self-absorbed, I missed her growing up.

She would scream at the end of the crocodile verse of “row row” by 5 months. She knew shapes at 10 months. By 12 months she was talking coherently.

Then at 2 and a half, with her fontanelle still slightly open (they should be closed by 18 months) she had a seizure. She was put through tests and we had a gruelling couple of months before she was diagnosed with benign Rolandic epilepsy in childhood.

I’m reading a book called Musicophilia by Oliver Sacks. One of the things he talks about is using epilepsy medication to control auditory hallucinations since it calms the over stimulus of those neural pathways. It seems almost fitting then, that we would discover tonight that our girl has perfect pitch.

I had suspected it previously, but now, hearing her sing intervals so effortlessly, it all makes sense.

Her favourite song is “Call me maybe” by Carly Rae Jepson, which she can sing in tune to the instrumental. I struggle with this and I have a trained (but out of practise) ear. She can also sing it perfectly in tune and in the same key as the original, despite not having heard the original for a day.

There is something very special about my girl. She is gifted.

Naughty

My three year old (almost 4, going on 18) is naughty. She’s getting more and more naughty by the day.
The thing is, she’s not the kind of naughty you see other kids being in supermarkets (and of course, my childen are always on their beet behaviour in supermarkets. Toodle pip and bullshit!) but this all-new breed of cleverly twisted naughty.
We get the refusal to follow instructions – all kids do that – but Lily follows it up with a dose of Extreme Stubborn with added Martyr.
For example, as punishment for not cleaning up, we put all of her toys in a black sack to be “taken out with the rubbish.” She was, quite rightly, upset.
Not upset enough to tidy and the threats were soon met with her turning her back on us and saying
‘Just put them in the bin.’
Wait, this wasn’t in the plan.
She’s not supposed to reverse this shit on us.
The toys came back in.
Sigh.
She’s also become very rude.
She tells me to leave and go to my other house. She tells me what to do, counts to three if I don’t do it, lets me know that she dislikes me being here.
I don’t let myself wonder where these choice phrases came from though. There’s only one place.
Me.
Shit.

More than a Bounty of issues

For the last few weeks, there has been a rise in the amount of tweeters discussing the Bounty pack.

Bounty packs are issued initially to put your notes in. They contain magazines, information, but most of all, advertising. Then once you’ve had your baby, a lady comes round to your bed, asks for your details and gives you a newborn pack which contains free samples, a bit more information and another doorstop of advertising. They’ll also send you regular emails about (I assume) products “relevant” to your baby’s stage of development. Personally I filter them to spam. It takes seconds.

So, what has the discussion been about? It seems its been led by a certain blogger website and has its own hashtag. Women are rebelling, Bounty. They no longer want your free stuff, your information, but most of all, they no longer want your advertising. They are horrified and disgusted that your associated companies would see it fit to pitch to their exact audience.

Oh, wait.

Isn’t that what advertising does? Daytime TV is full of quick loan adverts under the assumption that people watching don’t work so will need quick access to money. Google and facebook target ads based on what you view online.  Tweeters and bloggers collect similar people online then post links to their blogs.

This is advertising. Not exploitation.

Maternity services are a mess. There’s no consistent care, which breeds fear. There’s a lack of midwives and maternity units are closing up and down the country meaning women are not getting the care and attention they need, being turned away from hospitals or having conditions missed or misdiagnosed. There are no plans in place to test for Group B Strep as standard, something which could save the lives of babies.

These are things that matter.  Not whether you have a free pot of sudocrem, or if someone emails you with products which might interest you. 6 free pampers aren’t going to save a precious life, one swab could.

You could come home and dump the whole pack in the bin, send emails straight to the delete box, and be done with it. That is if you’re not too traumatised by a midwife you don’t know attending your labour, nipping in and out once an hour because she’s watching three ladies labour across the ward and there are no other midwives available.

L – Nov 17th 2009

image