Anyone else with child with epilepsy.

[T84]

My lg started having what was thought to be febrile convulsions at 7 months. Since then we have had more seizures most of which have been unexplained - leading to a diagnosis of epilepsy at 10 months old. My and oh and I are struggling recently to get our heads around it and to get the support we need. We have a great epilepsy nurse and consultant but would be great to hear from other parents who know have had first hand experience x

 

[Hoping for no2]

Oh hon I'm sorry to hear this. My nephew was diagnosed with epilepsy last year after a number of unexplained seizures and is now on epilepsy medication which seems to be controlling it. It's terrifying when they have a seizure and I can only imagine even more so with a baby. I'm afraid my experience is limited to what I'm told by sister but just wanted to say I hope you can find some support out there. Xxx

 

[T84]

Sorry just seen this - had given up on replies. Thanks hon, glad your nephew is getting more controlled. We've had a good 7 weeks or so, hoping medication is also at the right dose and controlling her better x

 

[Mar_15]

Hi there T84,

I'm not a parent yet, but I have had epilepsy since I was 11. You might have found lots of resources by now. We had a great epilepsy specialist nurse when I was younger and I think the Epilepsy Foundation has a helpline which my mum found useful.
I just wanted to say, I know my parents worried a lot about me and I hope you don't worry too much. I have had a totally normal lovely life so far, and have never let it stop me doing anything.

I hope your LO is doing well at the moment and you are getting all the support you need. xxx

 

[jessizz345]

I doesn't have any experience with this. Hope your LO would do really well.