DD has epilepsy:(

lostinrates

fallen_angel_69 wrote: »

If your daughters specialist puts her on medication make sure the chemist sticks to the same brand all the time . Generics are the same drug as a brand but stick to the same manufacturer . Most pharmacists will say generics and brand are the same thing which they are . In epilepsy you should always stick to the same one that way the biodiversity is the same . I work in mental health pharmacy and from personal experience I know this . I'm also very religious about the time I take them .
s

I recognise Mse is not the right place to expand on this. Would you be able to suggest somewhere to read further about this issue?

dawyldthing

I support someone with epilepsy and there are different forms, but with the right medication (we've had it swapped over a few times) it helps massively. Sometimes the seizures go in phases (like we expect a clump within a few days of one another) but it all depends.

I think as long as you support her and she knows that things will get better it will probably help

bambinaUK

I was diagnosed at the age of 13 with migraine related epilepsy. Bit of a nightmare at first, but then I decided I wasn't going to be embarrassed about it. I started by telling all my close friends at school what to do if I had a fit. If people at school asked me if I was an 'epi' I always said yes and told them what to do if I had a fit as well!! Soon shut most of them up. It never put my boyfriends off either, if they didn't know already, I soon told them.

She might be lucky in that she gets a recognisable aura when a fit starts. Teach her how to put herself into the recovery position if she suspects she might be going to have a fit.

Arrange with her school to have a little emergency kit of dry underwear and a spare skirt to keep at school.

I had tried out several drugs before I found that right combination. Took about 3yrs to get it right.

As I got older, I always told the bouncers at the nightclubs I visited that I had epilepsy, every employer I have ever had knew too.

Curiously it suddenly stopped at the age of 28 and I haven't had a fit for many many years. Im fully prepared that it might come back one day though. But life will carry on.

kingfisherblue

I know several people with epilepsy, including a couple of family members. I would definitely recommend a Medic Alert bracelet, but would also contact school to explain that your daughter needs to wear it, and why (as they might view it as jewellery, which is often banned). If she does have an indication that a seizure or absence is about to start, she should inform her teacher immediately. I know that teens do not like to be seen as different and can become embarrassed easily, but if you can arrange something with the school, it might help her to deal with it. A friend's daughter has epilepsy, and when she has a seizure in class, the other children are evacuated. This is primary, and the child has no prior warning. On the other hand, my MIL knows when it is going to happen, and can move into a different room. If this is the case with your daughter, maybe she could have a card to hold up as she and a couple of trusted friends leave the classroom (one to stay with her in the corridor and the other to go to the office for a member of staff).


Something recommended to a friend by Alder Hey Hospital recently was to film her daughter's seizures on her phone. This was because the seizures had changed recently, becoming more frequent and altering in appearance (more violent 'fitting' than previously). Although this must be very distressing for the parents, the consultant reckoned that it would be very helpful to them (the doctors, not the parents).

steelframedhouse

If your daughters specialist puts her on medication make sure the chemist sticks to the same brand all the time . Generics are the same drug as a brand but stick to the same manufacturer . Most pharmacists will say generics and brand are the same thing which they are . In epilepsy you should always stick to the same one that way the biodiversity is the same . I work in mental health pharmacy and from personal experience I know this . I'm also very religious about the time I take them .
s

lostinrates wrote: »

I recognise Mse is not the right place to expand on this. Would you be able to suggest somewhere to read further about this issue?

I'm not the OP in relation to this point but here's the guidance...

http://www.mhra.gov.uk/Safetyinformation/Generalsafetyinformationandadvice/Product-specificinformationandadvice/Product-specificinformationandadvice-A-F/Antiepilepticschangingproducts/index.htm

lostinrates

steelframedhouse wrote: »

I'm not the OP in relation to this point but here's the guidance...

http://www.mhra.gov.uk/Safetyinformation/Generalsafetyinformationandadvice/Product-specificinformationandadvice/Product-specificinformationandadvice-A-F/Antiepilepticschangingproducts/index.htm

Thanks.

That's really useful and interesting. I'm really, very grateful for that link, its going to be really helpful to me in discussing my year with a neurologist and medical team in review.

I'm not epileptic but take anti seizure drugs for another nuerological condition. There were shortages of a couple of the cat two drugs this year and its caused me some difficulty as I've been switched around a bit, on to alternatives we knew didn't suit well, generics and non sr formulae, which don't suit me at all. Its been a very difficult few months, as while I side effects on 'my drug' I'm used to them. The last few weeks I've been living week to week waiting to see if the next docket would have 'my' pills in them. Finally got them back recently and transitioning back still difficult! You forget the transition is hard too


Another Drug of mine that I believed was an anti seizure pill I don't recognise there.

fallen_angel_69

The guidelines are on a couple of sites .I checked in work today . The GPHC guidance has them the MRHA has them and also NICE
MHRA guidance on prescribing anti-epileptic drugs

The Medicines and Healthcare Regulatory Authority (MHRA) has issued new guidance on prescribing anti-epileptic drugs. This aims to help prescribing doctors decide whether or not it is important to maintain a consistent supply of particular AEDs for individuals with epilepsy.
Consistency of supply means getting the same version of a drug with every prescription. It doesn’t matter if someone is on a branded or a generic drug (one is not ‘better’ than the other) but finding a version that works and keeping to the same version is important.
What are the concerns about switching between drugs?

For many people with epilepsy, medication is vital to their seizure control. The key to medication working well is having consistent levels in the body throughout the day and night. This is why medication works best when it is taken at around the same time or times each day. There are several reasons why switching between different version of AEDs could be a problem for some people.

• Switching between different versions could affect the levels of AED in the blood, which could cause seizures or side effects (see 'What are generic and branded drugs, and why is this important?' above)
• Individuals with a learning disability or who rely on others to manage their medication may not be aware of the potential impact of switching AEDs, or may not be aware of when their AEDs have been switched
• Individuals with memory problems or confusion may not remember what their AEDs look like and so find it hard to ensure that they are receiving the same medication as usual. Or they may be confused about what medication they are taking, particularly if it keeps changing in colour or size. This could lead to making errors in what they are taking
• For some individuals anxiety can be a trigger for seizures, and getting different versions of AEDs could increase this anxiety (particularly if the individual is concerned that a change in version could trigger a seizure).

Whatever the reason, switching between different versions of a drug can be a real cause for concern, and have a huge impact on, individuals with epilepsy.


One thing I will say is it can be difficult going onto the tablets judging the dose which type can be hit and miss for a while . I took Epilim for years and it never really made me stable . I heard about a consultant in another hospital asked to be referred to him . I waited a while but eventually I saw him . He changed my medication to Keppra and Lamictal . They were introduced slowly but the side effects were quite bad but since then I've been seizure free for 9 years (touchwood) . It was a long time coming and I've had lots of fits sometimes really hurting myself other times just out for a while .


I just hope I've helped in some way to make your mind at rest easier . It is a worrying time and there will be some hard times and then easier times . It is liveable with and it shouldn't stop you doing things . Although I've never locked the bathroom door since I had a fit while cleaning my teeth my dad broke the door down to get to me . Now its just a habit that I've never got out of


A example of this is once I took a different brand for a couple of days as the brand I have was unavailable and it did make me unwell whether it was the drug or just a bad patch i'll never know but after working in mental health I now know to stick to same brand . Also say the Dr gave you Sodium Valproate this can treat epilepsy or mood swings . In epilepsy Epilim should always be given but if its mood swings any version of Sodium Valproate will do

lindsaygalaxy

Thank you all so much for your help. Some very good medical and practical advice. She is at primary for another year and a half yet so hoping it is stable by the time she goes to secondary school. There are 3 local ones and luckily she wants to go to the smallest one which is near my work but will depend if she can get a place.