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Beautiful step-daughter diagnosed with Epilepsy yesterday......

(12 Posts)
IrisGirl Thu 03-Jan-13 23:14:47

hi,
on NYE my dh went to his sister's for a family get together as we all have children and made life easier grin
i have two gorgeous step-daughters and one daughter who is 2 and we were enjoying a fabulous evening having great fun. anyway, at 11.15pm my eldest step-daughter looked like she slipped trying to stand up and it was only when she didn't move that we realised something was wrong....i grabbed hold of her (as her head was against the radiator) and placed her on the floor where she proceeded to have a full blown epileptic fit, an ambulance was called and she was taken to hospital, where she had another fit.
yesterday after tests etc she was diagnosed with epilepsy. as you can imagine this is a lot for her take in as it is for us as her parents...if my dh had his way he would remove all doors etc from the house lol i have stressed to him that we need to be careful not to smother her and most importantly to not let her lose her privacy or dignity.
i suppose i'm just after some practical advice or even just similar stories of people who have been through this with their children and how you coped.
i know Adele is not my biological daughter but i love her and treat her the same as i do my own daughter.
i look forward to hearing from you all [big grin]
x

zzzzz Fri 04-Jan-13 00:06:18

How old is she?

coff33andmintspies Fri 04-Jan-13 00:51:42

Hope she is ok. That was a really quick diagnosis. Have they advised you long term? meds?

starfishmummy Fri 04-Jan-13 09:34:47

It does seem a quick diagnosis to me as well.

Your dh and his ex need to talk to the doctors about what they need to watch out for and do; emergency medication (for prolonged fits) and regular medication to hopefully keep the siezures under control.

But otherwise treat her as you always have!

moosemama Fri 04-Jan-13 09:36:46

Hi

I don't have a child with epilepsy, but have recently had two seizures myself for the first time in my life.

From my perspective, I have found I'm quite scared at the thought of having another seizure. I didn't think I was/would be, but whenever I have any neurological symptoms (which is fairly regularly for me) I do start to worry. I'm not scared of the actual seizure, as I don't have any recollection of it happening, but I'm worried about it happening when I am out in public or alone with my dcs and this has actually resulted in me choosing to stay home, rather than go out alone, which has obviously had an impact on my freedom. I think this will improve with time though, as it's still very recent for me.

There's not much I can do about it at this point. All the tests are being done and I am already under a neurologist, so I have tried to concentrate on doing practical things in case it happens again.

I have had some really good advice on here, so as I'm new to this as well, I'll share those with you, although I'm sure you have been given similar advice already.

1. Make sure you have at least one, if not two ICE (In Case of Emergency) contacts on her mobile phone, so that you can be sure who will be contacted if she has a seizure when you're not around. Medical staff/ambulance drivers/paramedics etc look for the ICE contact on people's phone as a first point of contact these days.

2. Apparently it's common to be advised to make sure your bathroom door opens outwards. This was particularly good advice for me, as both of my seizures took place in the bathroom and if I'd been at home I would have been blocking the door with my body, so no-one could have reached me.

3. Make sure that everyone, including siblings and friends, knows how to ensure she is safe when/if she has a seizure. There 's some really good advice on the Epilepsy Action and The Epilepsy Society websites.

4. I know it's hard, but try not to treat her any differently. My family have been really good, but initially I could see them watching me, worrying that it could happen again any second and that actually increases my anxiety and my dh in particular has become very over-protective, which is the total opposite of how he used to be with me.

Finally, the vast majority of people with epilepsy are able to find a medication that suits them and controls the seizures and live normal, seizure free lives as a result. I find knowing this helps me to better accept it and be more positive about my future.

Fluffy1234 Fri 04-Jan-13 15:42:03

My son was diagnosed with epilepsy last summer but it took 6 months of tests and uncertainty before we were given a clear diagnosis. It is good you don't have to go through the waiting. You must be in complete shock. I remember feeling shocked and numb at the same time.
To begin with we did wrap him up in cotton wool but over time and once we saw his meeds were working we let him do more and more. His brothers are great with him. We kind of all look out for him, heat seems to be a trigger so if he looks to hot I whip of his top or open a window etc.
Big hugs to you xx

IrisGirl Fri 04-Jan-13 16:25:05

thanks guys, the seizures happened on NYE, and she was told it would be 2-3 weeks before she could have an appt for her EEG, but as luck would very much have it on the Wednesday morning, due it being christmas break etc, appts had been cancelled so there were spaces for her to have it. she had them done in the morning and it was late wednesday evening when the results came back confirming epilepsy. she still has a load of tests needed to be done, i think its to try and find out triggers etc. They are going along the lines of JME Epilepsy because of her age. She started on the meds on Wednesday evening, 250mg to begin with gradual increases over 6 weeks until she is on 750mg am and 750mg pm - they have said this will be a bit of trial and error until the right dosage is found for her, and until the right dosage is found she could well have other seizures in the meantime. its hard, as they have said there is a good chance she may never have another seizure, but bless her she will be on the meds for life now. she is 15, 16 in 2 weeks time

as for practical things, we have turned the bathroom door around today, and also her bedroom door, and the doctor have advised us to get her anti-suffocation pillows as one of the main triggers of this type of epilepsy is tiredness, and therefore seizures are more common late at night or early morning when waking. also, they have advised us to set a routine as to bedtime and waking up as regularity is very important as well!

i have stressed to Dh that it is important that we do not take away her privacy or dignity but it is very hard at the moment not to follow her to the toilet lol i suppose its all so very new and has happened so very quickly its hard to get our heads around it.
xx

IrisGirl Fri 04-Jan-13 16:34:42

@starfishmummy - we have decided both sets of parents/step-parents will be involved in the care meetings etc as we all have equal care of the girls and felt it was important that we were all up to speed on what was happening etc xx

zzzzz Fri 04-Jan-13 16:45:29

15 is a hard time to be different.

Normally you would be on meds for 2 years and then if you have had no seizures in that time you come off them, to see if things have resolved.

Which medication is she on? The side effects can be difficult, and you should all read them and be aware.

Our advice is no baths alone, no swimming far from help, no bikes on the road....

Be careful of upset tummies as it often men's you don't absorb drugs properly.

Regular bedtimes, paracetamol for fever always,

Fluffy1234 Fri 04-Jan-13 17:00:13

We've found the tiredness and lack of energy that the meds have caused, especially in the mornings have taken quite some adjustment.

Fluffy1234 Fri 04-Jan-13 17:02:57

Not sure if your step daughter goes to parties or drinks any alcohol but drinking and tiredness is also a trigger. Also exam stress is a trigger. I feel for you.

IrisGirl Fri 04-Jan-13 17:26:16

@zz she's on Levetiracetam (brand name; Keppra)
we're lucky in that she is not the type of girl who likes to go out partying but staying up late she loves!! to be fair to the girl she has taken it better than us, and she understands why earlier nights and more routine is needed and she's cool with that.
the doctor has told her to take showers rather than baths, and the only swimming she usually does is with us, which i don't want to stop tbh.
i'm not sure about the 2year thing, when the consultant went through the drugs with us, he said she would be on them for life, not sure if that will change 2 years down the line and she's not had another seizure??
its ironic that she has been told not to let herself get overtired, but one of the side effects of this particular drug is insomnia confused.
its all such a worry and a fear of the unknown at the moment, i'm sure as time goes on we will stop feeling as anxious as we do now and allow her to be in a different room to us blush lol
xx

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