Hopes seizures head drops at hospital 2years 7months old seizure after nap

Hope today after we started to walk through the hospital to physio seizures kicked in, she had just had a 10 minute nap in the car on the way so was guaranteed to seizure bless her x short and light drops hopefully will get lighter in the future as meds been upped again this month x happy afterwards, was great at physio, physio for her mobility ect as her ACC causes her delays aswell as the epilepsy but today we finaly mastered coming down steps on her bum x she doesnt do it in the safest manner still, but she does it lol 😀

[@sanaamaarir9314]

What medicine is your daughter taking ?

[@HopesSeizures]

Vigabatrin, keppra , clobazam and epidyolex

[@amberharrison4430]

Thank you for sharing! This really helped me understand/confirm my daughters pediatricians suspicion of seizures while still waiting for neurologist to fit my little one into their schedule 🙄. Now that it’s clear she’s had her “first “ atonic ‘drop’ seizure just in dec… lasted five min (6 months of age at time)… whats going to happen?! When can I expect to see her have another/frequency increase??! Ugh. This is making me a nervous wreck. I wish we had more ped neurologists!!!

[@HopesSeizures]

I know it's horrible just waiting and watching them suffer x hopes increasd daily as time went on, at 3 months it was one every other day, by 8 months it was everyday by 1 year it was up to 10 a day! We had an EEG at hospital but was only for 1 hr didn't see a seizure so we requested a 24hr home EEG and that showed multiple seizures and seizure activity only then did they fully believe us it's a nightmare to get a diagnosis and meds! She's now on 5 meds none stop the seizures! Bring reffered for surgery to have a 'Vagus nerve stimulation ' fitted now! Feel so bad for her, she's poorly at mo so seizures are all day long! www.epilepsy.org.uk/info/treatment/vagus-nerve-stimulation

[@dianagae3024]

​@@HopesSeizuresWere there no abnormalities at the first 1hours EEG. I was told that if there is truly an epilepsy some changes should appear on EEG even if the recording is between seizures.

[@HopesSeizures]

@dianagae3024 yes on all her eeg's

[@GG-vi4un]

This looks just like what my son is doing!! Might have to show my neuro doctor this video

[@HopesSeizures]

Aw glad it helped yes show your neuro, this is why we started hopes page as I struggled to find footage of what was happening to her when her seizures started and doctors wouldn't see her as we were in the middle of the covid lock down! Crazy, Hopes surname is Gregory too xx 🥰

[@meditogofilmproduction]

I take keppra for my seizures as well

[@demajionwallace6285]

Dejimon xsw

[@meditogofilmproduction]

Is the reaching out part of the seizures because she looks out of it and tired. Seizures are the worst and it causes migraines and restlessness and i hate it

[@HopesSeizures]

Yes I think, she does it during some seizures she trys to point an say mom, i think for reassurance or just automatic sometimes?

[@Medina817]

Hi my daughter is 14 months and she is experiecing this kind a seizure every 10 minutes I give her 2.5 ML Kepra it does not work on her can you tell me other than Kepra what medicine you gave your daughter ?@@HopesSeizures