Epilepsy

[Chitchay]

Hi does anyone have any experience of epilepsy diagnosis. My dd has had a suspected 2nd seizure 12 months since the last both events taking place at an outdoor festival (1st episode was put down to a one off or faint) 5 min tonic clonic with tongue biting, urine incontinence. She was discharged from hospital within 24hrs after a Ct scan which did not find anything abnormal and blood test which I only know showed a highish white blood count. We have been referred to a Fit Clinic for further investigation. Does anyone have any idea of time scales, we are in the sheffield area? We have been through this before as dd suffered with complex febrile seizures between 1 and 7yrs old but she has been well for 10 years. I am beside myself with worry and just want to get it sorted out.

Hey how have you got on? Does she have a diagnosis yet? My son (aged 15) was diagnosed with epilepsy in july after 2 tonic clonic seizures a year apart. They are so scary aren't they. My son has juvenile absence epilepsy- he has frequent absent seizures as well as the occasional TCs and is now on medication thankfully.

Hi thanks for reply, she has an eeg this week and an mri end of December. Things have been very slow. Fingers crossed she has been well, nothing since July, I'm not aware of her experiencing any other types of seizure but who knows. Its all a bit of a strange situation to be in. I have read up on the medications in case we have to go down that route. I hope your son is doing well, were they able to detect his epilepsy from the testing or was diagnosis just based on the tc seizures?

My daughter is younger than yours op (was two when she had three seizures in three months). We had the eeg, ecg and MRI all of which didn’t show any abnormalities but had epilepsy diagnosed from a video of a tonic clonic seizure that we sent to the epilepsy nurse. She also has a history of complex febrile seizures which I believe can increase the risk for epilepsy.

Oh fingers crossed for the eeg then. Yes my son's EEG showed absence seizures (which i wasnt aware he was having as they only last a few seconds). The EEG was done a few weeks after his second TC. The tc's are the worst arent they :( i had ptsd after seeing those. Glad your daughter is doing ok at the min :) how old is she?

@LilGem89 she 17 now. I actually haven't seen her have a seizure since she had the last febrile at 7, they were bad enough. Her recent 2 were only witnessed by her friends in the middle of a mosh pit both times! They described them as shivering like movements for about a minute and not typically like a TC, nevertheless she was still out of it for about 5 minutes, came round in the medical tent and was pretty much OK apart from the tongue bite. See what tomorrow brings!

Oh gosh! Not the best place to have a seizure bless her heart. At least there were lots of people around her at the time though. Good luck for tomorrow.
My son's have both been early in the morning just after waking. Last one at 5.20am and my partner was up for work luckily and found him. Hoping the meds keep them at bay. We are still trying to find the right dosage atm x

@LilGem89 I hope your son gets the right balance soon, medication certainly sounds like a challenge but a godsend once it's at the right level and he can get on with his life bless him.

Thankyou so much, hes still been having absences which is why we've been upping the dosage but hopefully we are almost there now. Luckily hes tolerated the meds really well too. Constantly have to remind him to take them though! Uhh teenagers lol. X