3 month old - possible epilepsy

[M0m2be]

last week my son had 2 absence seizers. I didn’t know what they were at the time but called 111 and they said to go to A&E. Was told by A&E that we would be referred for investigation as on reflection he had another one the week before but I had written it off as babies doing weird things.

Got sent up to paediatrics to make sure he was well and they said they wouldn’t refer but go to GP and they will refer if it happens again.

Well of course it has happened multiple times since and luckily now I have one on camera so I can show the dr on Monday and hopefully we will have a referral. I was looking at old videos of him and by chance I’ve caught him having another seizure in October so god knows how long it’s been going on for.

I’m so scared for him as he’s so young and I was hoping someone would be able to share a similar experience so I can know what to expect.

My husband and I are terrified and my poor daughter can tell that something is wrong and is really unsettled.

I have epilepsy and had seizures as a baby.
It must be so stressful for you to go through.

There are different types of epilepsy and it's difficult to predict how it will affect your baby, but you are doing the right thing and it's likely you will be referred to a neurologist who will be able to tell you more.

To reassure, I didn't have any seizures between around age 3 and aged 20, then started having them again, but then they were easily controlled with daily medication. I'm now seizure free again and have been for several years, I drive, have my own DC and head up a department at work.

@TomWambsgansSwans Thank you so much for replying. That’s so reassuring. It’s so easy to think of the worse case scenario.

My son has epilepsy. His is intractable which means he’s on several medications but still has regular seizures. However he is doing well at school, plays football, goes skiing and is the sweetest, kindest teenager you could meet.
The fear of the unknown is the worst part. If you’re on Facebook there are quite a few support groups, which can be helpful. Some people find them scary as you will see more worst case scenarios than good cases as 100 posts saying “no seizures yet again” are a bit boring.
The best thing now is that you’ve recognised it and will hopefully get a medication that controls the seizures. Many children grow out of it over time. I’m afraid no one can really predict which children that might be.
lots of hugs though. It’s a hard road. I hope you have a lot of support behind you.

@polkadotelephant Thank you. I will give the groups a look.

We went to the GP today who sent us straight to the hospital after I showed him a video. He said we shouldn’t have to wait for a referral, I’m so glad he fought my corner.

He ended up having one whilst we were there so they could witness it themselves. He’s now booked in for an eeg and they will then decide if he needs meds. They did say that sometimes they will grow out of it before they are 2 I have everything crossed!