Appointment with the epilepsy nurse

[SleepyJess]

Following on from my thread of a week ago asking for advice (counselling!) re: DS's second fit.. and the assumption that epilepsy is part of his condition now as well as everything else.. we today saw the epilepsy nurse. This was not before time as we should have seen one straight after the first (massive! 2 hours plus!) seizure.. but she was on holiday for a month.. so all I had had was verbal over-the-phone instructions on how to administer rectal diazapam myself should the need arise.. which I was hoping it wouldn't.. but obviously, it did!

I particularly wanted to ask about the timing of the drug, because, although I had it at home (this second time), the 999 service were insisting I not use it until the he had actually been convulsing for 5 minutes. He started off in an 'away with the fairies' stage which lasted for bearly ten mins.. followed by a 'proper' (general) siezure which only last for four.. hence the fact that we arrive at the hospital in the ambulance with him back in the 'away with the fairies' stage but having come out of the acutal fit-fit (IKKWIM!) himself!

Anyway, it would seem to be something of a grey area ... Apparently, it should not be given unless he is having a 'general siezure' (which is not the 'away with fairies' phase) but the reason they had me give it to him at the hopsital (after the general - proper - seizure had begun and passed) is because 'they (the hospital) are better able to make a decision'.. It also seems as though it is a bit controversial to go ramming something up the butt of a person who is not fully unconscious.. but frankly, if I can prevent him from going into a fully tonic clonic episode by doing just that, then I will! He wouldn't care anyway.. this is the little guy who skins both elbows and drips blood everywhere before casually pointing out the blood trails he is leaving without a care in the world! And to me, administering the rectal diaz. is not THAT invasive.. you only put in halfway in.. squeeze the vial thing flat, hold his bum cheeks together for a bit and then remove... as more-experienced-than-me parents will no doubt know.

But he also said that giving it when a person has not been 'generally' (fully) fitting for a full five minutes could result in it being given uneccesarily.. which is not preferably because it has such a knocking-out effect.. and may increase the need for oxygen. Have thought since he said this that I thought the fit itself has that 'knocking-out' effect anyway! Aargh it's a bloody minefield! The nurse was a lovely guy.. really understanding about the fact that we turned up with five kids in tow (I have my friend's children for 5 days and six nights as the friends won a holiday for two on local radio to Spain).. and that DS threw his baseball cap out of an upstairs window and it had to be retrieved at some inconvenience to everyone because it fell into a virtually inaccessable ornamental garden below. And that he then attempted to chuck a remote control from the room's TV out after it!

Both boys (DS and friend's 2 year old who hwe had taken into the room with us) became immediately spellbound however when Andy opened a suitcase and took out a fake foam bottom - complete with bum hole for practice drug admisitration! 'Bottom!'' 'Bottom!' they were both yelling in delight.. and I was quite smug that it wasn't 'bum!' that they were shouting! DS then tried to insert Andy's biro into the fake bum hole.. so I had to distract him but taking him back over to the window... while DH had a go at pretending to use the drug on said fake bum. (I subsequently missed my turn but had done the real thing on DS's real bum only a week or so ago anyway.. so wasn't too bothered.)

It was all quite stressful really.. but sort of funny, in a black humour kind of way, as well. When we left (with Andy following so as to try and locate the baseball cap which we could see out the window but couldn't get to at this stage).. both the girls, DD, and the 3 year old's sister (5) (who we had left with DS1 (13)in the reception/waiting area) got really upset and actually cried when they discovered they had missed out on seeing the fake bum! (The 2 year old was shrieking about it happily.. he is a very precocious and bright little boy with an amazing amount of language for his age.. so I had had to quickly explain to the girls and DS1 what he was talking about!)

Ideally we would have taken only DS2.. but our only babysitters (ie people equipped to handle DS2 antics!) are the parents of the above children that we had with us!.. so obviously that wasn't a option!

Sigh! I got most of my questions answered anyway.. and Andy took pity on us re the chaos of the two horrid boys.. and said we could contact him with further questions should we think of any!

BLOODY kids! WHY am I about to take my degree study in the direction of the educating of the little sh*tes! I don't even feel that I like them all that much! Seriously! (Got to be better than all the economics involved in social science though!)

I need a stiff drink and a ton of chocolate.. no wonder I am getting so bloody fat..

Sorry about length of drivelly post..

SJ x

[SleepyJess]

Well I thought it was worthy of a post.. ah well! (15 mins wasted! )

[heartinthecountry]

Hi SJ - Blimey, sounds like you've got your hands full!

Re: diazepan - I've never actually used it on dd as she doesn't go unconcious during her seizures and they tend to pass fairly quickly. I know parents in the states who use it quite frequently. It seems to me that most parents I know develop their own rules for when to administer. They know what is unusual for their own kid or when things don't look like they are going to settle down. And I think at the end of the day it is all a judgement call.

Sorry - not much help probably - but I suppose I am saying that if your ds continues to have seizures (which hopefully he won't) you will get used to it all and i suspect you will instinctively know when to use it.

[coppertop]

I know how stressful it is when I have to take my 2 boys to appointments - so I think you deserve some kind of medal for managing with 5! I must admit to sniggering a little at the fake bum.

It sounds like an absolute minefield, trying to work out if/when to give the actual drug.