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Epilepsy: new diagnosis, on epilim, seizures getting worse, no epilepsy nurse in borough, hosp not getting back to us: HELP!(13 Posts)
Can anyone help us by sharing experience, knowledge or putting us in touch with an epilepsy nurse service which we can access regardless of geography?
DD, 10, diagnosed and started on epilim just over three weeks ago. Started drugs, she's been on the full dose for 10 days.
Until 11 days ago she'd only ever had absence seizures but her diagnosis is 'idiopathic generalised epilepsy'.
11 days ago she had what we think is a partial or focal seizure (conscious but couldn't move or speak for around 30 seconds). She had one again, three days later. Then nothing for seven days, then yesterday she had three such seizures.
She started her full dose of epilim the day after her first partial seizure.
We're worried because she's gone from no partial/focal seizures to three in a day over a period of just 11 day.
Should we be worried or is this within expected parameters?
Has the epilim had time to work? Is it too soon to think it's not working? Or are we right to be worried?
Rang hospital and secretary sympathised that our borough does not have an epilepsy nurse as this is sort of thing they could advise on and said if things get critical take her to A&E.
We appreciate it could be the dose needs adjusting or the meds might not suit her and we understand that everyone is different and no-one has a crystal ball so no-one can say what will happen next BUT it would be really useful to know if other people have had similar experiences.
Is it possible for the epilim to cause a spike in seizures? I know correlation isn't causation but I can't help but wonder and we know next to nothing. There is only so much dr google can tell us.
Any help or info very gratefully received.
I am very surprised that there isn't an epilepsy nurse or consultant paediatrician to monitor her. I would go back to the GPs or to A&E to explain the position and query her dose? She needs to be under the care of someone!
My daughter also has idiopathic generalised epilepsy. She in on epilim which has worked to control her seizures (until we weaned her off it and then she had a fit so she is back on it again now).
We just moved out of London (where she was seen by GOSH and then the Whittington Hospital.) I went to our new local GP and got her referred to a consultant in a local hospital where she sees a paediatrician once a year to monitor her.
I hope you get some further help/information soon.
Also - some of the Epilepsy websites might have suggestions about what to do?
Thanks for reply. We are at the Whittington too. Consultant very nice and seems very good but is busy. We are Haringey so there is no epilepsy nurse. We've heard that there is one due to start but no-one can give us a date so our fear is it could be months away.
I've tried an epilepsy helpline twice, once they were great and really helped but the last time they weren't so good and I left feeling worse. Very frustrating.
We have tried the consultant today after bad day yesterday but her sec couldn't really help. She said she'd get message to consultant but not much else she could offer apart from suggest A&E if things get serious.
If i'm objective about it, I can see that in the grand scheme of epilepsy, three focal seizures are nothing to get excited about but for our ten year old who is new to this - and her anxious parents - it's scary and worrying and stressful not having any idea what tomorrow will bring.
That's why i'm here. I've pored over previous epilepsy/epilim threads but it's just good to hear from parents of children with same/similar diagnosis who have positive stories - or who can alert us to potential bear-traps.
So thank you for taking time to write.
My daughter has epilepsy and we were always told to gradually increase the dose onto epilim. Have you given it at full dose all at once? Your GP and pharmacist will be able to advise
Our consultant was Katarina Harris - she was very good and in fact when my daughter had a seizure out of the blue and during the weaning off process, when we had moved to Bucks, she responded to us by email about how quickly we should put her epilim dose back up. I wonder if the consultant's secretary would give you their email so you can ask some questions?
When my daughter first went on epilim she had a seizure a couple of months later but then it settled down and does seem to suit her.
We didn't see any of the side effects of epilim. Her appetite increased but we kept an eye on what she ate and she hasn't put weight on.
Sorry that it is so stressful at the moment - I feel for you. Hoping things become clearer soon.
We also stepped up on meds.
Young Epilepsy used to have a epilepsy nurse run helpline (and great info diary planners aimed at kids)
YourGP can get hold of the consultant (it's their job to support you/dd).
School may have an attached nurse/epilepsy nurse.
Keep a log of all meds and seizures.
Thanks all for your thoughts. Yes, we are logging seizures and yes, meds been increased over a period of weeks.
Good thought to bring GP in more. Not sure why I didn't think of that! And ta for tip about young epilepsy zzzzz, I'll check that out.
Mumsuzz, great to know epilim suits your DD and she hasn't gained weight. That's all I seem to read about epilim.
It does help to know there are other people out there!
My daughter, a young lady, is 5ft 2 and 7 stone, if it helps
William has worked really well for us too, once the dose stabilised. I think ten is a difficult age with hormones etc
Yes, it is a tricky age. She was a bit fed up this evening. Mainly angry I think but she had a cry and we had a chat and she perked up a bit.
It's a lot for our children to deal with.
Thanks for posting. Heartening to know weight gain isn't inevitable - not that it's the end of the world but just another unlocked for change for her to deal with. She's always been so slim (takes after her father ). I've always been keen to not give DD body image issues so we don't have scales in house. No idea what she weighs.
My dd is post operative so I know her weight! She doesn't get weighed at home
William was supposed to say epilim, sorry
Hope your DD OK?
Yes, guessed who William was. Think I might start calling it William. Sounds a bit friendlier
IMO, there's two possibilities:
1. children's brains are developing, which means the way epilepsy presents changes, as the brain changes - as per one of DD's consultant neurologists.
2. the Epilim has caused the focal seizures - it is known. Just look up on Google can aeds aggravate seizures? Here's one article among several
When DD starts on a drug, we normally see an effect on seizures as soon as the first dose is into her system. We were warned that Epilim might cause her to gain weight, however its not the drug that does that - its the increase in appetite, and what they put in their mouths. DD did not gain weight on Epilim for years. So long as you keep an eye on what your DD eats, she won't gain weight.
We have found all the drugs cause seizures - a type, which we have never seen before in DD. For instance, she went on lamotrigine and started having tonic drops. Ten days after coming off lamotrigine, the tonic drops stopped and she has never had one since! Ditto, zonisamide causes gelastic seizures (laughing for no apparent reason). She has been on Epilim for about 7 years, and she is ok on the lowest therapeutic dose, but if they increase her dose, the focal seizures increase. Its happened twice now. However, the drugs affect everybody with epilepsy differently, so just because it affects my DD like that, does not mean it will affect your DD the same way.
When we first had problems with DD's seizures, on her first drug, the GP told me that while they would prescribe drugs to adults with epilepsy, paediatric epilepsy was too specialist for them and they refused to do anything for DD. If I were you, I'd speak to the consultant's secretary again, and ask to speak to the consultant on the phone. I did this regularly when DD's epilepsy went out of control, and the consultants always rang me back around 6.30 pm the next day (when I guess they have finished work). IMO they should not have put your DD on a drug for the first time, and not given you an avenue to get back to them, if the drug did not work or the side effects were unbearable. Epilim may be a broad spectrum aed, but they should not have just assumed it would work fine. It can cause bad behaviour. DD has been put on aeds, which did absolutely nothing for seizure control; or we could not live with the side effects. I've spoken to other family members of people with epilepsy, and they too have found a particular aed either useless or the side effects made the relative's life not worth living. (Zonisamide springs to mind in several cases)
Thank you DigestiveBiscuit for an interesting, useful and well-timed post!
The consultant has got back to us and we have an appointment, with DD, this afternoon. We're just about to pick her up from school so it's great to be able to share your experience before we go.
A big thank you to everyone who has taken the time to post and share info. It's all much appreciated.
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