My 10 year old has been diagnosed with epilepsy

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My son has recently had a diagnosis of epilepsy. I am devastated. My anxiety has hit rock bottom. Is there anyone else out there who has been through a similar diagnosis and could tell me how things worked out. I’m worried about his future and I’m constantly on edge waiting for the next seizure. Thank you

My Dd was diagnosed at 10 with focal Onset Epilepsy with Motor Involvement. She has both focal and tonic clonic seizures. It look a while to get her medication right but her epilepsy was eventually controlled. After being seizure free for two years she was weaned off of all medication and is now stable. She is 17 now and has the odd focal seizure if she's unwell or stressed but manages well.
The first months after a diagnosis are hard as you will be so anxious. Get some seizure specific first aid training so you know what to go in an emergency including rescue medication training if that is something your child has been prescribed. Your national epilepsy organisation should be able to help. I am in Ireland and Epilepsy Ireland were a great support. Also look into getting an Epilepsy/ anti suffocation pillow to protect against SUDEP.
The sjockof the diagnosis and coming to terms with it are hard but it does eventually get easier.

I was diagnosed at 42. It was a shock. And the anxiety was through the roof.

Gradually I trusted my medication to stop the seizures, but also the one time I’ve had a seizure in the last 4 years it was ‘fine’. I got through it. (Obv it was shit and hurt and all the things but I got to the other side).

given yourself time to work through the anxiety. Can you speak to his neurologist without him there so you can explain all your worries?

My DS was diagnosed at 8, it was well managed by medication and his seizures stopped at about 14 to 16. It was so hard to come to terms with and we were told he wouldn't grow out of it. I know we were lucky. It will take a while to get used to it but there are some great doctors and medications and it's good to get a diagnosis so you can start to try out the treatments and see what works.

Getting the diagnosis is key, as then he's under a team of professionals who understand how to reduce his seizures & can provide you with support. Epilepsy Action is a very helpful charity which will undoubtedly have stories of hopes & fears you can relate to. Hope you have a good Christmas

My 5 yr old started seizing at 18 months. We finally got a diagnosis at 4.5. he has focal partial seizures and so unless you know him you wouldn't necessarily know that's what was happening. The worry never really goes and I found in the worse year when we knew he was definitely seizing and no one believed me were the worst and I couldn't forgive some people for their lack of understanding of the worry. Good news is the medication has definitely made a difference. There's a high incidence of ADHD and epilepsy in little boys too so difficult to tell what's what's. Now he's on it we can relax for a few years.

My DD had her first seizure at about the same age. It took a while to get the right medication at the right dosage but she’s 24 now and I think it’s about 6 years since she last had one. It’s pretty common to get a diagnosis at the start of puberty and get it under control by the end I think.

Hope you are OK. It is a shock initially but it will soon become just like any other childhood illness you have to deal with.

That sounds tough, I'm sorry 💐

My BIL was diagnosed in his teens. He was found slumped in the school corridor. It must have been quite alarming for the poor person who found him. It was later discovered that he'd had a seizure, so they put him on medication to help stop them/reduce their frequency. His mum must have been beside herself on the day she found out. She seems pretty chilled about it these days. He's 42 now!

I hope you're okay. It will take some time to adjust and come to terms with it, but you will absolutely get through it and it'll just become a part of your lives xx

My dd is 12 and has profound autism along with adhd and over the summer had 4 tonic clonic seizures. It was very scary as she’s non-speaking. We’ve had a diagnosis of juvenile onset epilepsy and we give her liquid meds twice a day. It’s very scary as she can’t tell us how she feels so we have to watch her very closely. But I found seeing her during a seizure really distressing. I worry a little less now but she’s had also had a night seizure so I worry a lot about her camera not alerting us and something happening. It has gotten better though, the worry. I suppose because she has a lot of different conditions and this is just another thing to add to the list. So I’m used to worrying a lot about her.

Thank you all for your replies. It really helps to read other people’s experiences. I am constantly on edge and thinking the worse. I know only time will help. Thank you for the pillow suggestion I have purchased one. Any suggestions to make sure he’s safe I really appreciate.

I have epilepsy. Stress, head colds, late nights are factors that can trigger a seizure. I’m particularly vulnerable a couple of hours after waking up. Look for the patterns.

Do join Epilepsy Action. They have an online community called forum4e.