Childhood Epilepsy

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My ds2 age 6 was diagnosed with Benign Rolandic Epilepsy coming up to 3 years ago now. He had only ever had 2 seizures almost 2 years apart which had been quite big seizures, until November this year where he a what looked like the start on a seizure that then didn't happen. This happened again last night just as he was falling to sleep and we are again left wondering if he actually had one or if we are over thinking things. He is quite frightened of them and struggles to get to sleep and stay asleep at night. I mentioned this to the consultant last time we saw her and she suggested that it was poor sleep hygiene and that we were enabling the poor sleep habits. She suggested a prize based merit system for if he goes to sleep before 9pm and if he stays asleep all night. He managed to stay asleep all night from almost the first night so we accepted that we probably played a factor in him waking in the night. However he can not go to sleep before 9pm all the conditions are perfect for sleep eg. story, no lighting, quite and relaxed. My dh sits in there with him as my ds doesn't like being in there alone when going to sleep. However since he had his first seizure almost 3 years ago he has never been asleep before 9pm. As soon as 9pm hits he is out within 15 mins most times and sometimes it takes 30 mins to 45 mins but rarely. He has loads of allergies to literally everything it feels like and has constant tonsillitis type symptoms and sometimes requires antibiotics to fight it. He seems to be unwell all the time and has lots of time off school due to this. My questions are do any other parents have children with this type of epilepsy and do your child have any similar symptoms to my ds? He also has a large lump behind his ear that I noticed last night is much bigger than when I got it checked a few years ago so going to Dr's today to get it checked again. Is it normal for children with his type of epilepsy not to sleep well? As his seizures have changed they are going to do a sleep induced EEG on Monday next week to see if anything else is going on.He also has mild asthma that gets worse in winter and I am now questioning if the clenil (brown) inhaler is causing them in some way as we don't use it all the time. They seizures even though different seem to be happening more frequently and I struggle with them and their uncertainty quite badly. How do you cope with them? Sorry for the essay and thanks if anyone replies :-)

Hello.
My 9yo dd had an unnamed epilepsy diagnosed aged 2. Closely resembled panayotopolous syndrome. Kids with that type usually only experienced 1-3 episodes from age 3 to 7 where they were expected to outgrow them. We hope the same for our dd. The seizures have no lasting neurological effects. My dd seizures evolved over time, 1st year there were a few, 2nd year a few more, 3rd to 4th year one a month, 5th year there were less with the 6th year just one or two. Her seizures lasted 12min, 45min into her sleep cycle.

Her specialist at Yorkhill in Glasgow was the best and he and his team supported us throughout. He had a very sensible approach.
When we worried about cause, what to expect, prevent an attack, how to treat when her epilepsy could not be labelled, he reassured us that there were over 100 different types of epilepsies and many more un-named, other than the common ones there really was not enough research to say what bought on the attacks. So we just went about life as normal with the information from the tests.
We knew that flashing lights and lack of oxygen (exertion) didn't cause her fits from the tests in the ecg, we were confident that there was nothing in her brain (opted out of mri until she was 5yo and could lay still) because she was reaching milestones physically and mentally. We opted no drugs as the fits seemed to not cause brain damage (though call but the right one for us) & drugs no guarantee of preventing a fit.
Anyway, for you, if you are worried then ask more questions. Ask if there is evidence that your ds particular epilepsy can be bought on by sleep disruption or lack of. Seems to me that he has an established sleep pattern. Does he nap? Does he have energy and appear healthy? Surely he would be having more fits if his sleep routine was a factor.

My advice, Trust your instincts and if you having a niggling worry, ask many questions until you are satisfied that you really do have an issue that needs addressed or you no long need to worry about it.

Oh when we were waiting on the 1 year free of fits for dd the specialist said sometimes absence seizures can replace them and we watched it for that. Ask your Dr if there is risk of other types of seizures developing or a typical scenario of behaviour of the fit as the child gets older or outgrows. Mention the lump. Good luck x

I reckon 9pm is his natural bed time, don't push it if you and dh are happy and it works for all 3 of you, plenty of kids go this time, my dd went at 6.30pm until she was 5yo, didn't force it, she just did, they are all different. good on you for doing the reward chart for staying in bed, benefitting everyone enjoy it and persevere. We bought dd in our room after 1st seizure because no one knew what we were dealing with. The first year, every night for months, we sat in her room for hours, taking turns until bed time until we found the pattern - really bad sleep training huh lol just do what's right for all of you for right now