Daughter has photosensitive epilepsy/meds/breakthrough seizures

Does anyone else’s child have breakthrough seizures on Lamotrigine? How long did it take to stabilise your growing child/or do their meds have to keep being upped? My daughter had her first tonic clinic seizure in July and was diagnosed with epilepsy (photosensitive) in September (after second seizure/EEG results). She has just turned 13 and has had 6 tonic clinic seizures in total. It was really worrying/scary when leading up to Christmas she has 2 seizures in 6 days. Her meds have been upped again. A paramedic told me it can take years to stabilise a growing child. I just wondered what other people’s children/young people experienced. This is so new to us and we’re learning more each day. I had naively thought it would be as simple as taking the medication and the seizures would stop but am on a steep learning curve and have realised this may be a long and bumpy road. Would love to hear from anyone who can relate. Thank you.

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Hi, my daughter just turned 13 this week and she has photosensitive epilepsy with breakthrough seizures although she is on Epilim not lamotrigine. She has had tonic clonic seizures since she was 6 and there was a ■■■■■■ of stability for 3 years (age 7 - 10) but then 2 years of increased tonic clonics and absences. Luckily in the last 6 months her absence seizures have stopped (they started when she was 4). Also, her tonic clonic seizures were 3 weeks apart and the last one was October. I think a combination of slowing down with growing and being stable on meds for about 8 months has made a difference. I think the next few years could be hard with hormones and growing. It takes a lot of time to get to the right dose with the gradual increasing of one or decreasing of another medication. Hang in there and hope she doesn’t have any side effects. It is a long road, and really hard to predict when seizures are going to happen but you’ll work out things that will help and she might learn to recognise signals. Happy to chat.

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