Epilepsy

My son with Down Syndrome had his first seizure at 18, he had to take multiple drugs which knocked him out! Fortunately his consultant arranged for him to have a vagal nerve stimulator. It has been life changing he now needs far fewer drugs as it hasn’t stopped the seizures but are now manageable.I believe it works by kicking in when his heart rate goes above a certain rate by stimulating the vagal nerve. It is useful if the person gets an aura as they can swipe the stimulator with a magnet (worn on wrist) and it can stop/shorten the seizure.

Thank you everyone. It does help to hear other people's experiences.
Settling on to meds seems to be key, so hoping they soon get that balanced.

Oh Santana I fully understand your anxiety. So much kind and positive advice on GN and I am confident there will be more! Your lovely GD will learn to manage her condition and will achieve her potential. Of course it will take time to tailor her medication to suit her . This must have shattered her confidence, especially not being able to have her work placement in a nursery. That has surprised me as most people with epilepsy lead very full lives - perhaps it was because her condition is not yet fully under control. I wish her well and both enjoy your time together tomorrow. 💐💐

My friend’s daughter has epilepsy. I witnessed it - was rather scary at the time. That was years ago.
She qualified as a Nurse. I haven’t seen them in a while, but I’m hoping she is continuing to do well.
Nothing like a little pamper to cheer your GD .
All will be well Santana

Our granddaughter has it and as others have said it can take a good while to find the right medication, she seems to be there now. She’s also autistic, attends college, can’t drive yet as she still gets infrequent absences, at 17 she’s doing well, a low dose of an antidepressant has made a big difference too.

My grandson has suffered from epilepsy since he was eleven. He is now 18. It’s truly a horrible shock when this happens and we had all the same concerns about his future. His medication keeps him stable so the condition doesn’t stop him living a normal very active life. He’s also learning to drive. Sometimes it takes a while to find a balance with the medication but once they do, hopefully your granddaughter will be able to start to live her life again. I send you both my best wishes.

My daughter was diagnosed at 25 after a Grand Mal seizure out of the blue, no reason has ever been found. She carried on her life as normal it took about 3 yrs to get her seizures fully under control most of the time. She’s now 50 brought up 3 children mostly as a single parent and holds down a full time job, she doesn’t let it stop her doing anything and most people have no idea she has it. She does have a discreet tattoo on her wrist that she has epilepsy just in case.
I hope your Granddaughters condition is soon under control and she can resume her studies at some point.

There are a lot of anti-epileptic drugs; & many can be used in combination. So it may be a case of trial and error to find out which combination is going to be effective for your daughter, particularly as frequent absence seizures is more uncommon than tonic / clonic seizures.
As it's affecting your GD's life so drastically at the moment, I would hope the neurologists will keep reviewing her until they get the treatment ideally tailored for her, but she must push to be seen if she's tried a drug regime for the recommended time without much improvement, or with persistent side-effects.
Hope she loves her new hairstyle

Thank you Grannynannywanny that has helped a lot.
GD has appointment coming up with a psychologist to talk things through. I'm hoping the drugs actually work soon as they haven't so far. She looks very pale.
I'm taking her for a hairdo tomorrow to cheer her up.

My son was diagnosed with epilepsy aged 18 in his first year at university. He had a seizure one day out of the blue and a few more in the coming months.

After investigations he was prescribed 2 types of epilepsy medication which quickly brought it under control. He didn’t allow it to hold him back. He graduated from university with an honours degree and has gone on to have a very successful career. Now in his 40’s and he continues to take daily doses of medication and his epilepsy is well controlled most of the time.

I can understand how worried you are feeling about your granddaughter. I was worried sick when my son was first diagnosed. But he refused to let it hold him back from enjoying life. Please try to put your worries to one side and encourage your granddaughter to achieve her full potential. She will learn to live with her condition and hopefully with the right medication it will soon be under control 💐

Google Epilepsy UK - and several support organizations come up. I hope you can find some help there.

My teenage GC has Crohns and their charity has given lots of support.