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I am so angry I could spit(epilepsy medication advice needed)

(26 Posts)
2shoescarriedapumpkin Tue 15-Sep-09 17:22:42

dd has epilepsy, she has always been on Lamotrogine , but she has always had the brand lamictal,
in the past the dr has tried to change it to ther generic one, so I spoke to them and explained that the slightest change to the medication could lead her to having a fit, all fine and the doctor has been prescribing lamictal.......
today my chemist rang me and said the prescription now was just for lamotrogine, so could I get it changed and a new prescription.
turns out the doctor changed it to lamotrogine back in may(the chemist misssed this) so won't change it as he says(via receptionist) that dd has been on the generic once since may!!!
so now I have had to make a sodding appointment to see him on thursday......
any advice on what I can say

lou031205 Tue 15-Sep-09 17:55:10

"Get your act together"?

Sorry, surely you just need to get the message across that any resulting seizure would trigger an immediate complaint as you have informed them of the implications.

lou33 Tue 15-Sep-09 17:59:03

have you noticed any change in seizure frequency 2shoes?

2shoescarriedapumpkin Tue 15-Sep-09 18:16:59

no, her seizures are controlled. because the chemist didn't notice the doctor had changedthe presriptuion, he carried on giveing me lamictal(this will have cost him)
it makes me so sngry as it is all about money.
silly thing is if dd starts having fits again, we will have to have Pharaldahyde precribed again(about £80 a bottle) so it is just plain daft

Nyrrem Tue 15-Sep-09 20:22:16

The key thing the Dr can't argue with is that in fact she hasn't been on the generic one since May.


TotalChaos Tue 15-Sep-09 20:47:59

can you speak to a neurologist or specialist nurse before thursday?

r3dh3d Tue 15-Sep-09 20:51:49

Quote the NICE Guidelines which say that generics should NOT be prescribed for E meds. (if you google it you should find a nice (ha ha) document you can print out and brandish at him) And get proof (if poss) from the pharmacist that she has not been on the generic despite him screwing with the prescription.

Threaten to take it to formal complaint with the PCT if he still refuses. Prescribing generic E meds is incompetent. And if he is (as he will be) just doing it to save money out of his budget, he needs his arse kicked.

feelingbetter Tue 15-Sep-09 20:55:25

I remembered signing this petition a while back.
Enough info there, surely?

2shoescarriedapumpkin Tue 15-Sep-09 21:34:59

i have found the site, but no idea where to find the right bit

r3dh3d Tue 15-Sep-09 21:39:55

Well, the NICE guideline is here, you want section 1.8.8

wuglet Tue 15-Sep-09 21:40:01

SIGN guidelines (similar things) are here

feelingbetter Tue 15-Sep-09 21:46:12

S'on page 56

2shoescarriedapumpkin Tue 15-Sep-09 21:46:56

thanks I have booked marked them both, i need to get acrobat to open the nice one

r3dh3d Tue 15-Sep-09 21:50:37

The text seems to be identical in both, just the section numbering is different.

2shoescarriedapumpkin Tue 15-Sep-09 22:05:13

thank you, that is what I need,
hopefully he wil just let me have the prescription, but if nit at least I have something to back me up.

JustCutAndPaste Tue 15-Sep-09 23:27:02

2shoes if your gp still won't change the prescription try taking it to Boots as they always give ds2 Lamictal even though it just says lamotrigine on his prescription. I was advised to do this by another parent I know who works as a pharmacist in Boots- apparently it is their policy to give the branded drug, plus they keep notes about each patient so if you go back in they will give you the same stuff you got last time.

I found this easier than fighting with the gp about it. Also signed the petition...

Good luck, anyway. I know we had terrible problems when ds2 was on generic lamotrigine. Didn't lead to any breakthrough seizures but it was like he was getting used to the drug all over again and would take at least a week for him to be himself again.

2shoes Wed 16-Sep-09 19:02:22

thanks for all the advice, I will let you know what happens

2shoes Thu 17-Sep-09 11:09:57

well that was fun.
bit all comes down to money and the branded is way more expensive than the generic and there is no proof that it will affect her.
so he gave me 2 weeks of the old branded on and then I have to ask at her MDR on monday.
I have decided if I can keep her on the branded on untill after her op on the 5th October, I will try her on the generic one.

2shoes Thu 17-Sep-09 18:47:13

bump for more advice

feelingbetter Thu 17-Sep-09 21:52:23

Where,s that there Riv when you need her?
grin & bump

2shoes Thu 17-Sep-09 21:53:15

I know , I keep hoping she will see this, she will be in bed now

Lauree Fri 18-Sep-09 23:33:00

You're right to be careful...
my DS had a series of massive tonic clonics when we got Orilept generic instead of Epilim one time. Shame because Orilept doesn't have the horrible pink food colouring in it, which is a good thing.

And here's the rest of the cautionary tale...
After those fits, DS's epilim dose was increased . unfortunatley I was so convinced that the fits had badly affected him,and it was all my fault because I didn't wake up and call the ambulance soon enough ... ( bet some of you will recognise this one ...) that I didn't realise the increased dose of epilim and not brian damage was causing DS to be stumbling around like a drunk all the time dribbling and shouting. And so he had to put up with weeks of being drugged up to the eyeballs before the chemist told me it was 'rather a lot of epilim for a five year old' I finally realised it might not all be my fault blush and went back to the doctor.

Thank goodness meds are changed to Keppra now, and DS is nearly back to himself again, but, my goodness, those drugs are heavy duty stuff...

By the way, it really does help sometimes to get all of this stuff of the chest and know that someone out there actually understands what it's about.. Thanks x

And where's Riven? I hope she's OK, I noticed a distinct lack of posts on the usual pages.. . sending you all a warm hug, and an extra one for Riven x

2shoes Fri 18-Sep-09 23:38:15

very odd that she hasn't been on here,

Fluffypoms Fri 18-Sep-09 23:57:52

Riven was on a lil earlier

sarah293 Sat 19-Sep-09 08:49:06

Message withdrawn

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