DD has epilepsy:(

lindsaygalaxy

After a year of hospital tests, a move to a new hospital after the first put it down to migraines and finally an EGG my daughter has been diagnosed with Epilepsy. It came as quite a shock as we hadn't heard from the hospital and then an appointment came through for 4 months time. They called and told me the other day and now an appointment next week. The doctor wouldn't give me many details and I don't even know what type. She is 10 and we haven't talk about it with her yet, want to wait until nearer the appointment.








Just wondered if anyone had an experience of epilepsy in children?


We are looking to buy a new house - is there anything we should be considering when looking?

joolesw1972

I don't have any experience of epilepsy in children, but I have worked with lots of adults who have epilepsy, I just wanted to say that in my experience each person's epilepsy is very individual to them and no two people are exactly the same, the newer anticonvulsants can be very effective and I have supported people who have had their epilepsy very well controlled, try not to worry until the consultant talks to you about her particular epilepsy and how they are looking to manage it.
It's hard not to google, but it's not always helpful - a useful site, if you've not already found it is;
https://www.epilepsy.org.uk/

Good luck x

Nicki

My daughter has epilepsy, quite poorly controlled and we live in a perfectly normal house with no adaptations. She has proper fits where she falls to the floor unconscious. I'm guessing as you are surprised by the diagnosis that your DD maybe just has absences where she doesn't lose consciousness just isn't aware for short periods?

There are specialist epilepsy forums for kids. I don't post in any but I did read a few when DD was first diagnosed and they would be worth a google.

jayII

I have worked with lots of children with epilepsy, a family member also developed it as a teenager. I agree that it is different for each person, but these days it is (for most people) generally well controlled by medication and doesn't need to make much difference to everyday life.


If your daughter has so far had headaches, rather than convulsive seizures, it may well stay at that level, especially if she is given effective medication. In my experience, taking care not to get overtired and avoiding stress as much as possible, make a big difference to how the epilepsy behaves in young people.

lindsaygalaxy

The 'bigger' ones so far have been - she gets a headache, feels tired and 'drops off'. When she wakes she is stiff, cannot talk or move. Nothing like the initial 4/5 in 2/3 month period last year. I have found she has had a few little accidents (wee) and hidden her pjs but she has always said she didn't make it in time (been very secretive) but wont talk about it. I don't know if this is connected. Ever since it first started she has stopped wanting to do any clubs or stay around friends houses and just wants to be with me. She has got into our bed a few times in the night saying she was scared and hasn't done for years before this all started.

System

My dd was diagnosed at age 7, it started with absence siezures but now is regular tonic clonic ones.

Hers is poorly controlled and after lots of different meds and having had a VNS fitted ive been advised that its likely to stay that way.

We ended up moving to an adapted council bungalow which gives her much more freedom.

The biggest issues in the previous house were the stairs and only having a bath as drowning is a major concern. My dd always uses Tenna pads and it makes her feel a little more in control.

You will find a way through my dd is now 17 yrs old and although its hard at times we muddle through.

GwylimT

Epileptic episodes can cause incontinence, it's fairly common during a seizure. My first wife had epilepsy, she suffered tonic seizures, but she normally had enough time to get on the floor or sit down before the seizure fully took hold. Hers developed in her late teens, hers was very well controlled and she didn't have any episodes for the last five years of her life (death unrelated).

VfM4meplse

I have a lot of sympathy with you OP, feeling scared whilst waiting for your DD's diagnosis is no fun but understandable. What you have described are classic absence seizures but she does need thorough assessment by a specialist.

The best thing you can do is to keep an open mind, make sure that your daughter doesn't feel it's the end of the world (even though it can feel like it at the time) and that the whole family are prepared to adapt because it's going to be an unpredictable journey. On a practical note, it's a good idea to keep a diary.

Once you know what you are dealing with then half the fear will disappear. There are a multitude of treatments available and it can take some time to get it right, particularly if the condition isn't stable, so persevere and you'll get there. X

fallen_angel_69

I've had epilepsy since I was 13 and have taken tablets ever since . The lack of bladder control can happen during a tonic fit . I found that I bit my tongue and had marks on it for days afterwards and felt as stiff as a board and I could sleep for 4 hours straight after a fit . When I came round I'd have no recollection of the fit and wonder why I was achey and so tired .
I had concerns about going out anywhere and at the beginning of having epilepsy I wouldn't go anywhere without a certain friend being there as I knew she'd be sensible and call my folks if anything happened .
On the positive side it's not the end of the world I thought it would be I was always embarrassed to say I had it and people said it would be they're always doom and gloomers about saying you won't do this you won't do that .
I'm 44 now I have 2 children am a pharmacy technician ( was told I'd never have a responsible job ) and am able to drive and have done for 9 years ( told I'd never do that either ) It took nearly 30 years to get my license but I have one .
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 .
When I was a teenanger like I said I was embarrassed and wouldn't take my tablets I saw it as a sign of weakness and in my eyes not "normal" but looking back I was stupid maybe I would have finished college at 18 instead of having to go back and do pharmacy in my 20's maybe I'd learnt to drive earlier I will never know . The one thing I do know is going to see a consultant in Birmingham and not the one in Coventry was the best move I did in my late 20's it was a complete change in medication I went through hell of side effects of coming off one and onto another but the end result was worth it I've been fit free 10yrs touch wood . I will continue like a good girl and take my tablets so hopefully i'll never have another one
Its a long road to finding out what works what doesn't and her epilepsy may not end up under control but its not the end of the world . Working where I do I see people everyday that still have uncontrolled fits and manage well ( I hope that didn't come across rude I just didn't know how to word it ) All I can say its trial and error finding what can cause it mine was worse when I was knackered stressed and periods my Dr put me on the pill at 16 to try and even hormones out which helped a bit I didn't go to nightclubs just incase but found out yrs later that my type of fits wouldn't have been affected by the lights

VfM4meplse

fallen_angel_69 wrote: »

I've had epilepsy since I was 13 and have taken tablets ever since . The lack of bladder control can happen during a tonic fit . I found that I bit my tongue and had marks on it for days afterwards and felt as stiff as a board and I could sleep for 4 hours straight after a fit . When I came round I'd have no recollection of the fit and wonder why I was achey and so tired .
I had concerns about going out anywhere and at the beginning of having epilepsy I wouldn't go anywhere without a certain friend being there as I knew she'd be sensible and call my folks if anything happened .
On the positive side it's not the end of the world I thought it would be I was always embarrassed to say I had it and people said it would be they're always doom and gloomers about saying you won't do this you won't do that .
I'm 44 now I have 2 children am a pharmacy technician ( was told I'd never have a responsible job ) and am able to drive and have done for 9 years ( told I'd never do that either ) It took nearly 30 years to get my license but I have one .
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 .
When I was a teenanger like I said I was embarrassed and wouldn't take my tablets I saw it as a sign of weakness and in my eyes not "normal" but looking back I was stupid maybe I would have finished college at 18 instead of having to go back and do pharmacy in my 20's maybe I'd learnt to drive earlier I will never know . The one thing I do know is going to see a consultant in Birmingham and not the one in Coventry was the best move I did in my late 20's it was a complete change in medication I went through hell of side effects of coming off one and onto another but the end result was worth it I've been fit free 10yrs touch wood . I will continue like a good girl and take my tablets so hopefully i'll never have another one
Its a long road to finding out what works what doesn't and her epilepsy may not end up under control but its not the end of the world . Working where I do I see people everyday that still have uncontrolled fits and manage well ( I hope that didn't come across rude I just didn't know how to word it ) All I can say its trial and error finding what can cause it mine was worse when I was knackered stressed and periods my Dr put me on the pill at 16 to try and even hormones out which helped a bit I didn't go to nightclubs just incase but found out yrs later that my type of fits wouldn't have been affected by the lights

This is exactly the kind of invaluable first hand experience the OP needed to hear, good on you. :T

VonB

Hi, my son has had Epilepsy since he was six weeks old and he has just turned Twenty. His Epilepsy is caused by damage to his brain so is still pretty unstable but a lot better than it was during his teens. We have made a few adaptations to make his life easier for him. We laid carpets to help soften his falls a little and had a wet room fitted so that he is able to shower alone and be safe.

I would recommend getting your daughter a medical alert bracelet. It will give you peace of mind when she starts to go out and about on her own or if she is ever taken ill at school, I was once in Sainsbury's and had no phone signal when he was taken poorly at school but the paramedics were able to get all his medication and medical information off of the there and treat him safely.

Also remember that there will be a lot of over the counter medication that she will not be able to take now so it is always best to check with a pharmacist first and also some herbs and oils are not recommended for people with epilepsy as they affect the way some medications works.

Try taking her to an epilepsy support group. I found it really helpful to speak to other parents and also it is important that she knows the precautions she has to take but also for her to meet other children with epilepsy so she has someone she can talk to and mix with and realise she isn't the only one and that having Epilepsy makes her no different than she was before, Just that she has to be more careful with things like swimming etc. Epilepsy action have some very good information leaflets on their site.

We found keeping his blood sugar levels steady really helps. Also lack of sleep and stress can be big triggers for him. I personally found the hardest part was to not wrap him in cotton wool. I was worried every time he went out and still am to a degree if he is late but feel better knowing that he has his mobile on him and he has his bracelet in case he is ever taken ill. But thankfully so far he has not needed it. But the biggest adjustment to him having epilepsy was definitely for me and not him.