Potentially sensitive subject
My 8 year old daughter has starting having seizures over the last 9 months. She has has an EEG recently and am waiting for the diagnosis in a few weeks. We think she has benign rolandic epilepsy (BRE).
My questions isn't medical but if there are any mummies out there whose child has this and how do you cope with bedtimes? As this the fits happen as she goes to sleep everytime she goes to bed I am on edge. I have a baby monitor that I have on my chest so I can hear any little noise and run to see her.
Also how have you explained it to your child or siblings?
Pretty stressful time at the moment as you could imagine so any suggestions would be great.
1 Replies
My nephew has BRE and my son has tonic clinic seizures and absentee seizures.
When my nephews seizures started she used to stay with him until he fell asleep. As treatment began (not always necessary) the seizures became rare and everyone has relaxed.
I find that after a seizure I’m on alert for awhile too. Over time I’ve also learnt to relax and luckily like the vast majority of people treatment has been successful and seizures are rare (seem to occur when over tired or growth/puberty spurts) usually a quick adjustment of meds and we are back on track.
Any new diagnosis is scary and that’s ok to feel that way. My son has about 6 serious diagnosis and everytime is the same. But over a period of time it’s becomes your norm and you stop panicking every single time.
We just tell cousins and other children it’s like when the part of the car misfires. It’s ok to think it looks odd, but don’t panic, just get an adult.
Kids usually cope with these things well if we don’t make a huge drama about it but just tell them.