Please help with Epilesy...

[DianaBarry5]

Hi everyone

I'm at my wits end and I know there is a lot of knowledge on here about everything. My daughter was diagnosed with epilepsy when she was 16. She has absence and tonic clonic seizures and is on sodium valproate. This med stopped the seizures for about the first 18 months then she has been having a tonic clonic every 5 months.

Today she had a seizure and knocked her 2 front teeth out. Apart from that she has piled weight on and is now obese. Her neurologist seems to think this is normal and I really don't know what to do. I'd like to see a different neurologist as the neurologist is paediatrics was so much better but don't know what to do.

Bananabread1234

What is the best thing about private care with Epilesy? Might she not just get the same NHS neurologist?

It sounds really tough. I have epilepsy and it was hard to get under control. Three things:

1. Is your daughter seeing an epilepsy specialist neurologist not just adult neurology? She absolutely should be but the care she is receiving does not sound like it. There are lots of epilepsy specialist centres around the country, ask for a referral to your nearest one - if she's still having seizures after trying 2+ meds that is what the NICE guidelines recommend. there's likely to be a wait but I found it worth it. They did loads more tests to pinpoint what caused my epilepsy, reviewed my meds, reviewed whether surgery was an option for me, offered preconception counselling before I had children and gave me an epilepsy nurse who attended all my antenatal appointments with me.
2. She should not just be taking oral contraceptives if on valproate. The guidance on that is super-clear, she needs to be on long-term contraception like injections, coil or implant: see here But tbh she should not be on valproate at all if she might ever want children in the future - current medicl advice is she would need to come off it and try something else and then she'd be back to square one. There are plenty of other meds besides Keppra and valproate that control TCs, she needs a specialist to work with her to find the combo that works for her.
3. I appreciate your concern about her weight. AEDs can cause weight to go up and down - I have had both. If you want to support her I would focus on her mood, self-esteem, and general lifestyle stuff like keeping active in a way which feels good, eating well etc. Its a sucky thing about epilepsy that if she changes meds her appetite may be affected and she may not have much control over that. But she'll have more control if she generally feels good about herself + overall health matters when living with a chronic condition not size alone.
4. Definitely try calling the Epilepsy Society or Epilepsy Action for advice about getting a referral or check here. I asked my community neuro to refer me when it was clear we were getting nowhere and he was happy to. There is also a FB group called Women with Epilepsy run by an epilepsy specialist nurse that you or your daughter might find helpful.

We don’t have a private neurologist, just NHS. I know at our trust there are a few doctors on the team. That’s probably the case where you are. If you don’t get any luck there, then consider private. Hope you get sorted.

Thank you bananabread1234

Sorry that was for lysistrathereindeer

PenelopePipPip

She isn't seeing a specialist but I am trying to make an appointment with GP for advice.

I have epilepsy, I had my first seizure when I was 42. Had one the next year and then nothing for four years and then had another one before Xmas. I've seen two consultants and they both think it was due to the Moderna booster.
Re a private consultant- I saw one privately after the Dec seizure as I was told it was a long wait to see one on the NHS. I'm now seeing him on the NHS so you can always have a private consultation and then ask to move to their clinics. I really feel for your DC, it sucks, and is hard enough to get your head around as an adult, let alone a teen.

My son (9) is slowly being taken off the sodium valproate due to the weight gain associated with it, its being replaced with topiramate. Less weight related side effects. The epilepsy nurse told us its usually given to teenage girls as it hasn't the ill effects on pregnancy that sodium valproate has and as he has had significant weight gain, its hopefully going to help. He has tonic clinic, myoclonic, focal and absence seizures so is on clonazepam as well but the topiramate seems to be doing a good job and he is down to just 2 mls of the sodium valproate on a night now- have you an epilepsy nurse you can call to discuss your options? It truly is trial and error with meds, its taken us 6 years to find the right meds for my son, but we are getting there- good luck!

We were given an Epilesy nurse and after the first seizure under adult care, I called her for advice. She said she would inform consultant. However the next telephone call (covid times) from him he was clueless about the seizure so I haven't bothered with her again.

Heaviestdirtiestsoul

Thank you, I've noticed Topiramate is used instead of sodium valproate and is efficient at weight loss.

Yes, go private if at all possible.
Literally google Epilepsy specialists (as penelopepippip said) and look at their qualifications. Ideally they will have epilepsy related publications and will have trained at and work in tertiary specialist epilepsy centres.
Then phone their secretary and ask how to be referred. Some will ask for a GP to refer, and if so you can ask your GP to do this.

Hi Op

I have had epilipsy all my life - diagnosed at age 1. I could never find the right medication to be fully controlled so I always had minor seizures with the odd major one thrown in just to keep me on my toes. They tried many different drugs, different combinations but I was just one of those uncontrollable cases.

Seven or eight years ago my consultant retired and at my first appointment with his replacement I was asked if I had ever thought about having brain surgery. I had brought this up with his predecessor before and was just given the brush off and has been lead to believe that I was not suitable for it. The new consultant told me that I wouldn't know until they did certain tests on me.

Six years ago I eventually had surgery and have been seizure free since then - miracle case I know. Even the docs were shocked. Anyway my point is that if your DD cant be controlled with medication maybe this should be thought about and also don't stay with the same consultant for 20 years like I did. Definitely worth a different opinion.

I dont know where you live but there is this place:

epilepsysociety.org.uk/

my DH was referred here over 25 years ago where they specialise in epilepsy - they are part of UCL neurological hospital in london. My DHs epilepsy has never managed to be completely controlled although he has managed to live with it and hold down a professional job.

during his time here he has tried every drug which has become available as well as being considered for brain surgery which they decided was not suitable for him.

Last year he had a vagal nerve stimulator placed in his chest which is fairly new and so far is having some positive affects.

see if you can get your daughter referred here.

My friends DD had the surgery and is seizure free now too.