Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

The more you talk about this drug, the more I find myself wondering what we have put Bee through over the last (almost) 8 years. She has been on (and essentially failed) 11 epilepsy medications over the years. Her first anti-convulsant was started when she was only 3 weeks old.

Her most recent new drug (Lacosamide), like the lamotrigine for you, had a noticeable effect on her seizures. However, it also reduced her to essentially catatonic. She was so ataxic that she fell and split her chin open (and will never lose the scar from that), she was literally unconscious/unresponsive for 4-5 hours after every dose (and that was at only half of her goal dose). She lost the ability to walk independently - but her seizures decreased to 20 or so a day from the 100+ she currently has.

She is currently on 400 mg a day of lamotrigine, 1800 mg a day of gabapentin, and 10 mg of clobazam, and still seizing as much as 10 times an hour (verified on EEG). Poor kid is only 7

As you have so eloquently said... epilepsy sucks.

Aw, BeeMom. I really feel for Bee! I didn't realise her epilepsy was so severe. Puts mine in the shade.

Epilepsy is the biggest bastard ever.

Yes - when she was 5, we were told that it had progressed to the point that she officially had "epileptic encephalopathy". She has had 2 strokes (1 as a newborn, the second when she was 6), but her seizures are mostly genenralised - even the small portion that are partial onset do not come from the damaged area of her brain. While sleeping, her brain is in almost constant seizure activity.

On paper, medically Bee is a train wreck... so we don't pay much attention to that. Instead, we try to concentrate on the amazing and exceptional little girl she is, and deal with issues as they arise, instead of looking for them. It has caused significant conflict with one of her consultants (particularly when we refused to travel thousands of miles to see someone for more diagnostic testing) but DH and I can be VERY stubborn, and the Chief of Paeds is on our side.

We are travelling again on Tuesday for more surgery for her Wednesday... while I absolutely agree it is necessary, I am NOT looking forward to it. I hate Hate HATE HATE having to be 200 miles from home, just the 2 of us, to accomplish this, but it must be done.

Sigh Why can't we just deal with simple issues like runny noses and scuffed knees?

Is she well enough from the infection she had to have surgery?

Try another med...it's all you can do. Like I said, it took them about 4/5 years to hit on Gabapentin for me. And there's still lots I haven't tried yet...

Nah, explain what the eye bloke said.

Maybe it's the combo with the benzo's? Not sure. I'm sure you will find something that works without the shitty side effects soon. It does often take a few goes with different meds to find the right one for YOU.

You will feel better now you've stopped taking it, and you can discuss which you think would be best to try next.

Might be worth doing some of your awesome research, so that if the Neuro makes a couple of suggestions, you can yes or no them based on what possible side effects there are known to be common and whether they can be taken with benzo's or not...

With regard to Keppra... if you add a dose of 100 mg of Vitamon B6 with every dose of Keppra, it all but eliminates the Kepprage. We could tell within an hour of giving Bee her Keppra dose if someone forgot her B6, as her behaviour was over the top awful. Get the B6 into her, and she was the same silly girl we are accustomed to.

Pffff...snowed in?! We had constant snow, but I think the ground's radioactive here, it's barely settled - about 1/2 an inch if that in the ground. Had a lazy day Saturday, and did my housework today.

Quiet weekend this weekend - DS2 AND DS3 were at their dad's place this weekend (he rarely takes DS3 as well). So I got a good night's sleep and a lay in last night, and a weekend with only 2 DC's.

OK, those 2 DC's seemed hell bent on pissing each other off, and melting down at each other (and the fact that the other has the temerity to exist and breathe the same air as them...), but it was a quieter weekend nonetheless!

It's coming to something when preventing DD from stabbing DS1's leg with a fork is a 'quiet' weekend...(!)

I am not sure what it is about the weather this year, but it has been positively nuts. This time last year, we were in summer clothes and playing in the garden blowing bubbles... this year, it seems I am snapping icicles off of delicate body parts instead.

Oh, and Couthy, the official word from the Infectious Disease consultant who saw Bee when she first presented was "she will have a complete course of IV antibiotics, there is no reason to delay it. If we tell them, however, they will postpone again, so as long as her culture is negative, I say have it done".

She was admitted at our "home" hospital for the infection, but the surgeries are at the "children's" hospital it is a floor of a wing, hardly a hospital There is no love lost between the centres, but because of the amount of vascular surgery Bee has had, there is no one at our home centre comfortable to do that portion of it.

She is not "well" yet, but she is "well enough", if you get my meaning.

Yy, I know what you mean. I hope it all goes well for Bee.

BAD LANGUAGE ALERT - MORE THAN USUAL!!

I'm still sitting up, trying to drain my bastard washing machine again because BOTH DS1's pairs of school trousers are in there, sodden.

Bastard washing machine is only about 4/5 weeks old. Fucker. It was brand new, not even secondhand.

It stopped mid cycle, came up with an error code.

I discovered idiot Ex had stuffed the manual God knows where instead of on top of the machine, where my manuals have lived for 15 arsing years (that he has been with me on and off for the majority of...). "I only wanted to read it" "I forgot where you keep it, I shoved in a random pile of paperwork" (that might well be in the Jeffing loft now...)

Soooo, I Google the error code - blocked pipe it says. So, I unhook the outlet pipe from my down pipe under the sink and put sink & drain unblocker down my down pipe. Try machine again.

Nope, still stops halfway through a pump out cycle and shows the error code.

So, idiot ex that lost the manual drops off DS2 & DS3, and I get him to empty the clothes out of the machine. There is, apparently, no way to open the bit at the front that you would usually use to drain a machine.

So, hoping for the best, we stick it on a pump out cycle whilst empty. It works.

So, we stick the wettest stuff - my jeans, DS1's jeans and DS3's BLOODY COAT on a spin cycle. THAT works.

Yay! Think we.

So I stick the rest of the load back in to spin. And it comes up with the fucking error code again!!

It's now full of water again. And DS1's school trousers. So I try a pump cycle. And it comes up with the error code. I try again. Error code again.

Then I figure that the last load was lighter, so I take two really heavy things out. All that remain in there are 101 socks, a thin vest top, and two pairs of BLOODY SCHOOL TROUSERS. And still the bastard machine won't even pump out the fucking water.

All I want is for the machine to spin the socks, vest top and trousers so that I can tumble dry them FFS.

I NEED the vest top, all my other tops are white AND I CAN'T WASH THE BASTARD WHITE WASH WHEN THIS LOAD WON'T SPIN.

AAAAAAAARRRRGGGHHHHHH

The whole point of buying a brand new washing machine was so that the cunting thing worked!

Excuses SF with the fact that 4DC's, one a toddler with Hypermobility and possible probable dyspraxia, and two others with Hypermobility and dyspraxia causing more food to end up on their fronts than in their mouths, a washing machine is essential.

Not even mentioning DS2's soiling...

leonie You said you had snot. How bad? The bad snot, pain around eyes, worse when bend forward all very sinus infection like.

Could have had sinus infection at same time that made the headaches even worse?