23mth old diagnosed with epilepsy - help!

[lostlenore]

DD had a tonic clonic seizure about three months ago. No rash, no infections, no reason given. She had D&V on Monday, a 'rage' on Tuesday then a full tonic clonic on Wednesday. Cue ambulance and hospital admission. Two more tonic clonic seizures Wednesday and one Thursday before being given anti-convulsants. We don't know anyone with the condition and are kinda freaking out as to how this will affect her. She has had 'rages' since forever where she goes rigid and screams for about five minutes - now we suspect these are seizures (but previously laughed them off as temper and now feel awful). Any knowledge of limitations/living with it would be really helpful!

Just live your normal life. Honestly, yes it is scary for you (your ds probably won't remember the seizures) but just get on with things. Hopefully the medication will help.

Make sure you give her anti convulsants at regular intervals - so if she has two doses a day they should he twelve hours apart. Have you been given "emergency medication" - if so make sure you know how to use it and keep it handy, remembering to take it out with you!

Also have your medical team discussed what you need to do in case of prolonged seizures? For us it's to give emergency medication after five minutes and to call an ambulance. We also used to keep a grab bag handy with spare clothes, nappies, wipes, a bottle if water and long lasting snack for me

Thank you. That was what we wanted to hear. It's so hard now to let her out of my sight at all (even if I need the loo!). I need to see her having a fall that isn't a fit, it's all very raw now.

She has epilim but no rescue meds - they said to call an ambulance if her fit lasts longer than two minutes, so if she's still fitting then the paramedics can provide it. We will get the other medicine if she continues to have long fits, but they are hoping that she will be controlled now. TBH, we didn't get an awful lot of info at the hospital, guess that will come when she has an EEG and sees a specialist in four weeks, I only know what I've googled.

How did it go down with the rest of your family? My parents are away at the moment but I don't know how to help them to be comfortable with looking after her, hopefully if we stay calm then they will be too.

That sounds good advice re the ambulance. They tend to use rectal diazepam which was always great "fun" as ds tended to empty his bowels when he had a seizure!

DS hasn't had a seizure for a long time but still takes epilim..we are reluctant to rock the boat and stop it.

We're probably in a different position regarding family to you as ds has other disabilities/medical problems so they don't look after him much! The only family to see a seizure was my Dad and he was in has eighties so never looked after ds anyway. The Mil does have him sometimes and I wasn't entirely comfortable at first because having not seen him having a seizure she just decided that they don't happen!! But needs must sometimes and everything has been fine.

Im sorry that your DS has other issues too. How old is he? Good that his seizures are controlled now - how long has this been?

My parents are turning 70 so don't want to give them more than they can manage!

Thank you so much for answering. I feel like Im still in the zombie state and need to have a bloody good cry at some point and get really drunk
but good to know it can become a part of life x

Thank you, Lost. He's almost 16 now. Had his first seizure at at around 2.5 - he was pretty toxic at the time with what turned out to be a massive infection so they thought it was a febrile convulsion. He was fine until he was 4 when he had a massive one in hospital. But he has brain damage so epilepsy is not so unusual. His last known seizure was around four years ago but there was a funny turn at the pils which may or may not have been. They're also in their 70's. Mil said he was completely out of it...then when I said she should have called an ambulance she said he wasn't!! Sigh.

I hope that the meds work for your DD. You might find there are groups near to you where you can meet other parents in the same boat. I am by no means an expert (other than how ds is affected) but always happy to listen if you need a sypmapthetic ear.
meet others in a similar position to yourself.

Just wanted to add. I'm an adult with epilepsy. Apart from being unable to drive it hasn't held me back. I have a good job and have just given birth to my second perfect daughter. I would recommend joining Epilepsy Action. They are a fab charity and have a free advice line and lots of information to support people and families with epilepsy. It no longer has the stigma it once had. Good luck!

I have had epilepsy for 22 years and live a very normal life. Good career, kids etc However I take my medication religiously and I avoid triggers like the plague. For me they are tiredness and stress, but you can have epileptics who are sensitive to certain smells or flashing lights. You need to find the best neurologist you can get (someone specialising in epilepsy and ideally in children) and together figure out triggers and the right medication. Take control and hopefully it will be manageable. Best of luck.

Thank you so much ladies!

Good to know that it isn't a barrier to a normal life - trying to arm myself with as much knowledge as possible and there are some really good websites, I feel far less terrified now. Still really sad but thats normal huh.

She seems much more like herself today and is up to her usual tricks with her big sister so trying to get back to normal.

She is going for an EEG in two weeks so hopefully we will be able to ascertain any triggers for her and her seizures will become few and far between. Will join Epilepsy Action, thanks for the tip!!