Full tonic Seizures

[Lesley25]

This weather (we think) has bought on 2 seizures in 2’weeks.
The epilepsy doctor and team just want to a sleep eeeg and bloods under sedation as my son cannot do it any other way ,he is severely disabled and strong at 16 years old.

The problem is I can’t believe this is just epilepsy manifesting now he’s older when every other seizure has been in relation to an infection . Last one was 2020 when he had something in his ear .

how do I get them to listen to me and do an mri, Whilst he’s under sedation?

I am at my wits end trying to convince them . I have private cover , but I don’t want him to
be sedated twice and I wouldn’t even know where to start to organise private tests .

i just think they see a severely disabled young adult and think “it’s just his epilepsy” he’s not medicated, and when I mention CT , they rightfully said that since the last seizure was end of June , if he had a brain injury then we would’ve seen it sooner then now when he had another seizure today, he would’ve gone downhill faster.
he has been on antibiotics , I noticed his tongue was swollen a week ago and tbf his GP said letter antibiotics incase it’s an infection we can’t see. These have ended 5 days ago. Then we have another seizure today.

anyone have any thoughts? I’ve asked for the ENT to check his ears throughly under sedation -not a quick glance incase he has put something back in his ears .

I’ve been prescribed lamotrigine and clobazam building the dose up slowly.
anyone else have any experience do these meds?

Sorry you haven’t had any responses.

Have you asked why they don’t want to do an MRI (or CT, not sure which you want?) even if they believe it is epilepsy? If DS hasn’t already had his procedures under sedation, if possible, I would ask about a thorough dental examination at the same time.

DS1 tried Lamotragine. Not for seizures, but as a mood stabiliser. He had to stop it because it affected his liver function. He also tried Clobazam to help sleep on bad nights. It didn’t work for him for that, but it didn’t have awful side effects.

thanks @perpetualplatespinning
i think it’s just because his consultant is on annual leave , but I’ve sought a private consultant and we have started medication today, so I’m hoping it stops the seizures.
i will be using the MRI as a way to also getting the dental
check and ears cleaned out along with an x ray ds has to have anyway so hopefully if they can see there are multiple procedures that have to be done anyway, I’ll have less of a fight.
i shouldn’t have the fight in the first place but that’s a whole other thread!

I have never come across a parent with a child, who has seizures just with something like an infection.

Most parents I’ve come across, the child was either having seizures pre-birth or they started young - and seizures happened regularly.

DD1 developed epilepsy at 12. She started with the odd absence; then the complex partials started increasing to 50 a day, until after about 3 months (while she was on the waiting list for an EEG), she had her first tonic clonic. She got an EEG straightaway, which diagnosed epilepsy, and she was put on a waiting list for an MRI. So, I don’t understand why they haven’t talked about one for OP’s DC?

Anyway, a couple of years later, when she was referred to the regional centre, her consultant neurologist told me “Epilepsy like this doesn’t just start! I think she’s been having sub clinical activity all along!”

Another consultant told me years later, an EEG had shown DD1 having seizures, when there were no outward signs of one.

I wonder OP, if DC was having sub clinical activity between the seizures, provoked by infections? Anyway, I believe from reading that epilepsy can start at any time in life.

Thank you @BlueandWhitePorcelain
Ds
is very complex so an EEG would be difficult but he will have one along with an MRI

Mum of a very complex boy. He has been on Lamotrigene & Clobazam for years now. This has been the best period we've had for seizures and even if we have breakthrough, the dose is increased. An EEG would give more answers than MRI. We usually do it strapped into the wheelchair with lots of distractions and generally two of us holding hands.

Thank you for the tip @IceyBisBack
My sons now on 200mg am and pm Lamotrigine and clibazam and this is our final increase. We do expect breakthroughs and have been told it can be because of a newly dx genetic mutation chd2 that means his seizures cannot controlled by drugs. We are due an eeg but a sleep one , I’ve had conflicting answers from neurologists about whether the drugs given to sedate will interfere either the results but he’s on the list . Good tip about the wheelchair , if he has to have an awake one we will try that