Wednesday 30 June 2010

Something on the mind.

Ever wished you could see inside your child's mind? I had that opportunity today. To see inside Mog's skull, neatly sliced up into sections, bottom to top and then front to back (or possibly side to side; I lost track of the nose and ears).

Mog can think. And communicate. Mog enjoys music, feeling wind on her face, and kicking small children. Mog likes to choose shoes and clothes and hairbands. She thinks it's funny when other children are told off. Mog loves to be bounced around, whether it's on a trampoline or a rollercoaster, she likes riding on 'planes and boats and trains, and she enjoys swimming and having showers.

The above stuff is important. Why? Because, working from the bottom up, Mog's scan shows a nice intact brain stem. This is good, we like solid brain stems, they are kind of important if you want to go on doing things like breathing and keeping your heart beating. That's the good news. And then, as the scan moves up through her skull, instead of seeing increasing amounts of grey matter, we see instead a big black hole. Little shreds of brain cling like cobwebs to the dusty shed roof of her skull. Two, nicely matched black holes, where all the thinking parts of her brain ought to be. Fluid replacing them. Not too much fluid, no signs of pressure; this is also good. And no sign of further damage - no stroke, no hydrocephalus, nothing sinister. Just this massive, overwhelming "insult" which was her first welcome to this world. She shouldn't be able to do any of that.

So, CT scan shows that there's not much inside Mog's mind. Let's move on. EEG results next. And this shows, as far as I can interpret EEG-speak, that the whole brain activity is somewhat slower than that of people whose brains are more intact. That there are constant little discharges coming from all over the place. And that of the two larger seizures observed during the course of the recording, the first (Absence followed by her own little fitty features) originated in the left hemisphere. And the second (lip smacking, twitchy, other bits and pieces) originated in the right. Which at least means we don't need to worry about whether removing bits of her remaining brain might help.

Interpretation for Mog? Essentially, everything we thought definitely was seizure activity, is. Everything we thought might be seizure activity, is. Some of what we hadn't considered to be seizure activity, may be. And when I say she has seconds between seizures when she's alert and responsive, and then she goes back into a seizure, and it can be a good few minutes before she's back with us again, which can be for minutes but can only be for seconds again, that is in fact exactly what the recording shows is happening. So that's nice for her...

It is good news there's nothing new on the CT. The seizures have not stolen further brain cells. On the other hand, that was a nice rational explanation for what was happening. Turns out, although Cerebral Palsy is not supposed to be a progressive or degenerative condition, Mog is just one of lucky ones who find that it is, and who have increasing problems as their bodies grow.

So, we have some kind of a tentative plan. We're going to be trying a different antispasmodic drug. Then, when we know how that's affecting her, we'll try increasing her antiepileptic medication, one at a time from her existing ones. And if those don't help, we'll start going through the chart again in a slightly different combination. Somewhere in the middle of that, we'll probably celebrate Christmas, and maybe by this time next year we'll have a happy smiley child with fewer seizures and no spasm at all?



Anonymous said...

Hopefully it will work. What different anti-spasmodic are they suggesting? Tweaking M's stuff at the moment so looking for ideas!

kitchu said...

wow, so now i see the whole story. i am left sort of shaking my head, wishing there was a quick and easy solution for her with the seizures.


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