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Childhood Epilepsy

(2 Posts)
AimzB Mon 08-Jan-18 09:31:43

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 had what looked like the start of 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 does 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. The 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 yhe rambling and thanks if anyone replies :-)

Possum123 Sat 13-Jan-18 04:55:55

My DD has BRE..She was diagnosed about 5 years ago. She is on medication as was having daily seizures. Her first seizures were similar to what you describe.

I think that the more I encouraged early nights and good sleep hygiene the longer it took for her to fall asleep. She has taken melatonin for a few weeks at a time to reset her body clock and I encourage early nights as much as possible.

I think that it is normal for children with epilepsy to have anxiety and he may benefit from seeing a psychologist to give him some strategies to help him deal with the anxiety. An app like smiling minds may also help him when going to sleep at night. It is a mindfulness app and you can choose programmes for different ages. Or maybe audio books may be relaxing for him.

I would also pop some Epsom salts in his bath every night to help relax him.

My DD was quite vit d deficient though we live in a hot country and her mood and sleeping has improved since she has been supplemented with vit d. She now takes it from autumn to spring.

I would ask for a referral to an immunologist to sort out all the allergies. He may be constantly getting sick because his immune system is busy because he is eating foods he is intolerant to.

I would also ask for throat to be swabbed and perhaps blood test for strep as even with a negative throat swab he may be colonised with strep. He may need a longer course of antibiotics to treat this. Immunologist may be able to help with this.

I think the allergies, asthma and tonsillitis are probably not related to the BRE but who knows.
A sleep deprived EEG is a really good idea. My DD has had them every time things have changed.

If you are on Facebook I suggest you join some BRE parents support groups . They can be good sources of information however are often US based.

Also have a look at the following link.

http://epilepsygenetics.co.uk/wp-content/uploads/2014/04/Rolandic_Epilepsy.pdf

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