9 year old daughter newly diagnosed with epilepsy with photosensitivity

Hi :wave:t2: Our 9 year old daughter has just been confirmed as having epilepsy. We don’t even know the type yet until we see the specialist on 21st March but have been told it is also with photosensitivity. Got so many questions, mixed emotions and just wanted to reach out to others who are going through this or have been through this. What happens next?

Hi, our 9 year old daughter was diagnosed with epilepsy at the beginning of November last year. This is my first time on the forum so good to connect with someone in a similar position.
My daughter has focal seizures - they are not triggered by photosensitivity. They occur in the front left side of her brain and they make her turn to the right which makes her twist and fall over. She has around 15 in a 24 hour period (although many are at night).
In terms of our experience of diagnosis - we spotted the seizures in mid-October and took her to the GP. The GP referred her to the hospital who came back with an appointment in January! We took her to the GP a second time a week later as the number of seizures had escalated quickly and this time she was seen at the hospital the next day. She had an EEG and they could immediately see that there was abnormal electrical activity all the time even when she was not having a seizure. That led to the epilepsy diagnosis and a prescription for keppra the same day. We were also assigned an epilepsy nurse which has been really helpful as a point of contact for questions. She also had an MRI a couple of weeks later to check that there wasn’t anything specifically causing the seizures.
Unfortunately the keppra didn’t control the seizures for my daughter, nor did clobazam, but now we are trying Lamotrigine and that seems to be working. It is different for everyone though so you just have to try different medications.
It is all very scary and worrying and there are so many thoughts that run through your head. I have had many sleepless nights as I am sure you have too!
I am still getting to grips with the school side of things and how they deal with it. I have had lots of different and contradictory advice and am not really sure of the best approach but I am learning as I go!