Just diagnosed with epilepsy.

[ballybean]

My son, aged 9, has 2 seizures in october. One witnessed, one suspected. Tonic clonic.

He had EEG this week and doctor called me tonight to say they suspect he has SeLECTS epilepsy. She wants to hold him off meds unless he has another seizure. Also sending him for MRI.

Anyone in similar position?

Hello.

My son, 18, has generalised epilepsy. Tonic clonic seizures.

I presume you have read thi
https://www.epilepsy.org.uk/info/syndromes/self-limited-epilepsy-with-centrotemporal-spikes

The side effects of the meds really messed up my son’s memory which affected his GCSEs. He also had terrible tremors, his hair turned curly and other significant side effects.

in your position I would hold off the meds for a while longer, watching waiting.

It is very scary to witness a seizure. We are still not used to it.

@ballybean my son age 8 had an absence seizure in November and an absence with clinic movement 2 weeks ago. He had an EEG and and MRI due today. We have a telephone appointment with a nurse next week. I'm worried it's a type of epilepsy And I'm worried about how frequent the seizures might be, the effects and potential medication and side effects. I dint know anyone with it, or anything about it. Please let me know how you're getting on.

@KellyMarieTunstall2 sorry to hear you are going through this too. It's scary..my little man is doing alright, no seizures since. Still waiting on MRI and follow up but staying off meds for now. Want to get a seizure monitor but haven't had the money yet. His is linked to sleep so we just check on him frequently and try to keep to good sleep routine.

I joined a couple of epilepsy Facebook pages for kids which has been helpful although also a bit scary seeing what others go through

@ballybean I'm sorry you're going through this too. How did you find out your son's seizures are linked to sleep? I'm finding myself constantly worried now about when and where it might happen again.

We had the EEG done, it was sleep deprived so we had to keep him up all night the night before. They tested him with flashing lights and hyperventilating then he went to sleep for 20 mins and it was then that the scan showed seizure activity even though he was actually seizing. She said there were 'spikes' on the scan when falling asleep and just as he was waking up. So she said it's linked to that. I assume there's no other triggers but not really sure.

Initially we were watching like a hawk but things have settled down a bit. He has tonic clonic seizures and his gums were badly bitten after so assume we would know if he had had another. I'm going to get some sort of monitor though as she said if he has another he will be going on meds

They prescribed us madazolam as emergency medication aswell for prolonged seizures

Previous message meant to say *even though he WASNT seizing

My 5yo is being tested for benign rolandic epilepsy which is linked to sleep. all of her seizures happen when she is falling asleep or waking up. We are awaiting EEG for confirmation.

@Complexcass

I think that is what my son has but it is not being called selects according to my consultant. Has he had scans? It's so stressful, are the seizures tonic clonic?

Sorry reread your message and see your daughter is still waiting for eeg, has she had many seizures?

*now being called selects

I couldn't read and run. I just wanted to give you a bit of hope as an adult with epilepsy who has been on medication since the age of four having suffered tonic clonic seizures.

I just want you to know that he's not destined to struggle forever and there's a huge chance life will be totally NORMAL even if he receives a diagnosis and needs medication.

The huge majority of people with epilepsy have their seizures under control. There are so many medications to choose from/try/combine-it's just trial and error to find what works. Some people suffer terrible side effects and others don't.

My seizures are triggered by stress, hormonal changes and lack of sleep. I've had a few periods in my life where I've had them regularly (uni and pregnancy) but in between life is totally normal. I've gone 10+ years of being seizure free at a time.

The side effects of my meds have been manageable (mainly just tiredness which I'm able to self manage). I've always done well academically, have a doctorate and children and I drive! Work in a stressful job too, and I'm fine!

I just wanted to give you a positive story because I know how anxious my mum always was, and still is! Wishing you and your little one all the best Xx

@NewYorkDilemma thanks for posting. Just reading of your life experience so far has given me some reassurance. Thanks again💐

Ah i didnt know it is now being called selects! Interesting.
she has had 4 seizures (that we know of), 2 tonic clonic and 2 considered partial seizures or “seizure-like activity”.
they have always happened at 5.30am roughly.

we have been told absence seizures are not linked to this kind of epilepsy which is interesting also as her teacher has flagged moments of zoning out/spaced out and no one can shake her out of it - altho this is brief.

My son was diagnosed with SeLECTS at 9 years old (it was called CECTS then) following 2 tonic clonic seizures within half hour of falling asleep, 4 weeks apart. We reluctantly started medication on doctors advice. He also had an EEG and MRI. He has been seizure free since. He’s 11 now.

Over the first year we were really strict with bed time and sleep routines and it has been sooo stressful but he’s doing ok. I’m not convinced that the meds don’t impact his eduction though as he has slow cognitive processing and gets really tired. But don’t know if that’s the epilepsy (you can have seizure activity in brain even when not having seizures), medication side effects, or just him! We have a video monitor in his room on advice of doctor.

Doctor wants to wean him off meds later this year as apparently this type of epilepsy goes away by puberty.

At the time it was near on impossible to find anyone else going through the same thing.

@megmums sorry to hear you are going through same thing. I also found it hard to find any info on this type of epilepsy.

Unfortunately my son had another tonic clinic seizure last week and is now on meds (keppra) I really hate giving him medication but I'm too scared not to. I do know of a family who 'cured' their daughter through diet but I'm not willing to take the risk. It takes so much out of him (and us!) during seizure.

My neurologist said once he is two years seizure free they will do another eeg then if normal wean him off meds.
In fairness, he was wrecked first day of the medication and today but then was fine, yesterday we upped it to 2.5ml and he was tired again today but I think it's just him getting used to it.

Funny you say that, he really struggles with memory and always has, he is being assessed for dyslexia so not sure if it's just him rather than the epilepsy. His brother also dyslexia

@teenboymom sorry to hear that your son has had another seizure. I do hope the medication works for him. I wasn’t happy about medication but it has worked for him and he’s been seizure free since the first dose. Interestingly, our consultant says it’s unusual to do a repeat EEG before weaning off medication but it’s an option we will have later this year. His first EEG showed clear spikes. So in theory if they have gone he should be ok?! He’d been on medication for a while when the EEG was done and the spikes were still there. My son had expressive and receptive language delay prior to diagnosis and I have read that’s not unusual. Also read that cognitive processing issues are also fairly common. However the consultant doesn’t agree and thinks these issues are rare! I guess we can only go on our own experience! He got extra time for his SATS last year and I would hope that reasonable adjustments will continue if he needs them.

Dd was diagnosed with generalised epilepsy about a year ago. She s has had 3 tonic clonic and many partial seizures.
She has been medicated since July with basically no side effects other than a bit more tired on occasion and I do think her memory isn’t that great sometimes.
but epilepsy itself can affect memory.
It’s not under control yet. Puberty is making it mkre
complicated.
Hers seem to only occur within the first hours after waking.
I am hopeful that long term her life will be normal.
I found facebooks groups to be nothing but terrifying as they were just full of people with all the worst possible outcomes. No positive stories.
Your sons age makes it very possible that he will grow out of it.
Do not be put off trying the medicine. Again people
only really write about the negative reactions.

Thank u for the reassurance I am a mother to a 17 year old his been diagnosed with epilepsy since he was 14 medication and trying to get him to have a good slp routine and limited screen time is a challenge for me and I am scared in case he has a seizure outside some where and harms himself from it

How often are his seizures? Is he on medications? If he’s been diagnosed for 3 years and never had a seizure outside the house then he’s been pretty lucky. At 17 a lot of it will be down to him now. Taking meds and sleeping etc has to come from him.
It’s so hard to watch isn’t it?

His medication was chnaged last year. his on a different one at the moment. he has had a recent seizure where he fell off his bed and was seizing on the floor it's horrible to see although not the 1st . Lack of sleep, fatigue, if his unwell and also flashing lights are some triggers. Your right about him taking care of his own health, it is a stress on me trying to make sure he has his medication on time and isn't on screen too much but end of the day he needs to take responsibility. Hope your little girl is doing ok