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Rolandic Epilepsy - drugs(14 Posts)
Last week I had the fright of my life. I heard strange noises coming from my daughter's bedroom and went in to find her lying on the bed, with her eyes open (but she clearly was not conscious), the left side of her face drooping and her throat making strange noises. It looked like a stroke, but after an EEG and MRI scan, we have been told it is something called Benign Rolandic Epilepsy (which I've never heard of, despite being told it is the most frequent form of epilepsy in children). Given the potential alternative causes, I feel massively relieved, especially as it should disappear before adulthood.
The consultant said it was up to us whether we put her onto drugs or not, and we have decided for now not to. However, I have a couple of questions:
- We decided to avoid drugs because this is her first fit and it may never happen again. However, I noticed from an old American thread that a parent had noticed their DS regularly sitting up in bed in their sleep (our DD does this most nights). Has anyone else found this to happen with this type of epilepsy, and if so, what did your GP say about it?
- Secondly, our Consultant seemed reluctant to give us drugs because of potential side effects. What has your experience been? I've also found on some MumsNet threads that this type of epilepsy has been found to be related to reading difficulties. Last year my daughter was diagnosed with dyslexia - could drugs potentially have a positive side effect of diminshing her reading difficulties? Or is this wishful thinking...
We will of course raise all this with her consultant but it always helps to find out what other parents have experienced.
sorry don't have specific experience of Rolandic E but know a little bit about seizures.
I think abnormal brain activity can be associted with weird sleep like myoclonic jerks or sleeping with eyes open. But GPs or even neurologists don't seem to know much about this.
I think you are wishful thinking about the drugs treating dyslexia! however, it may be that the epilepsy and dyslexia are linked because of some sort of neurological issue. you could try to read a bit about how to help your child's neurological system in general terms. i have read Robin Pauc and Patrick Holford on this and found them interesting.
Have a look at Benign childhood focal epilepsies: assessment of established and newly recognized syndromes which includes a description of Benign Rolandic Epilepsy.
I will try to put a research paper collection together for you, and post it later.
Many thanks for the link to the journal article. It has done a lot to reassure me, particularly the information about the frequency and duration of seizures. I now feel more confident about not using drugs. Sounds like this is an area with a lot of unanswered questions. The point in the paper on support for parents was interesting - it is certainly distressing to find your child in that state and not know what is causing it. My brother has a form of epilepsy that affects his left leg and so I'm wondering if the two are linked (he has cerebral palsy so I initially thought the two instances were not connected, especially as he has retained epilepsy into adulthood).
Anyway, thanks again
hi catpaws, how frighteninging for you. You may have seen my threads as you have been searching but my dd had an eeg recently indicating benign rolandic epilepsy.
She had a collapse last year and a couple of episodes when ill of drunken seeming behaviour but it is unclear whether thses were epileptic fit or related to the genetic condition she also has. A few weeks ago though she came to my bedroom door in the night then collapsed at the top of the stairs with eyes open and one hnd/arm twitching. The neurologist said this is the only event he is willing to say is a definate epileptic event. So like you we are not medication her as yet.
I was worried that she fits in the night without me knowing as she is always falling out of bed but he said the fits are harmless anyway and was quite blase.
DD has soem learning difficulties and specific language impairment which affects her understanding and speech quite severely-her memory for language is very badly affected. I read up on benign rolandic epilepsy and got myself a bit excited that she coulod take medicine and it would help the learning difficulties bt the neurologist felt the side effects could actually impair development in some cases which made me less keen!
Hi again, my dd had a fit this morning, she looked like she was wretching but was making a kind of choking noise, it was horrible. Anyway the neurologist was called by the hospital when we went in and he still doesnt want to medicate.
Hi catpaws, my dd1 had benign rolandic epilepsy diagnosed when she was 10, and we did medicate... but we live in US, and I think doctors here tend to medicate first, rather than having a wait and see approach. Also, before she was put on medication she had 3 grand mal seizures over the space of a few weeks. The medication completely suppressed seizures (previously she only had them when she was asleep), and after 18 months or so she did change medication because she started having breakthrough seizures on the first one. She had no side effects from the medication, and it meant that we could relax about her being safe when we were all asleep. (Her seizures presented as grand mal, so whole body was affected, but she never swallowed tongue, wet herself etc.) Now we are the other side of this - 3 years seizure-free, off all medication, and it's like nothing was ever wrong with her.
Thanks for letting me know your experiences and I am sorry to hear your DD has had another episode. Even though I now know what the cause is, I am pretty sure I would be just as scared if it happened again. Like you, it troubles me that she might have them at night. Last year she developed a very large blister on one hand (the blister almost covered the whole of her palm) and the hospital insisted it was a burn, which was confusing as none of us could think what would have burnt her. I now recall one evening when I found her bedside lamp on her bed and am wondering if that was a fit that led to her hand resting on the bulb. I am very surprised that a week later I am still feeling quite wobbly about it all. Interesting to hear your consultant still doesn't want to medicate - I guess I am still trying to get my head around the fact that it is benign, despite looking anything but!
Wentshopping - My consultant did say that medication would be appropriate if it happened a lot, but he said it was unlikely to. Hopefully he's right. And thanks for reassuring me that one day we won't be worrying about this.
Hi, like you I keep going over things that have happened which could have been fits, its so hard to know isn't it? And totally get what you mean with finding it hard to beleive it is benign, when I got the letter saying what the result indicated I was so relieved at that bit of the name! But it certainly feels scary when it is happening.
DD has had two fits in the space of three weeks after having had a gap of around six months or more (unless the falling out of bed stuff is her fitting-the neurologist didn't seem overly concerned just told me to keep a diary).
The hospital also said that two fits in three weeks still isn't what they would call frequent and they'd only want to medicate if it was causing a problem. I am pretty sure that this latest one was cause by extreme tiredness as she'd barely slept the night before and has just started full tiem school. But the the two times its happened recently she's been clingy in the lead up to it so hard to know what came first!
Hi Catpaws I am a mum with left temporal lobe epilepsy. Even the modern drugs make you tired, not great if you're trying to learn. A good source of information is www.epilepsyaction.org
FWIW DD2 is on Sulthiame. It's not widely prescribed here but it is commonly used for Rolandic epilepsy in Germany. She is doing really well on it (she doesn't have Rolandic tho) with few obvious side-effects.
It's a confusing picture then. Seems that in the UK doctors are more reluctant to prescribe. When I was told dd might benefit from medication if they become more frequent, my idea of frequent was once a month! I guess we'll have to wait and see how she gets on.
I feel that my dd having two in three weeks is pretty frequent too! Its certainly enough to interfere with life if she has it in the day as it causes such exhaustion afterwards. Epillepsy action were really helpful for me too in fact after that remeinder I may give them another call myself!
Tbh I got the impression taht they take parents views into consideration a lot so if you felt that it was interefering with normal life or causing distress they may medicate. I actually find this being involved in choices quite hard on parents (have had to make major decisions regarding when surgery happens for dd) but can see why its done.
Hi again. It seems the consultant was not asked about medication when we were in a and e, it was the registrar. The reg called me yesterday to say the consultant wants him to discuss medication with me as she could have it if we feel she needs it. Felt like saying well I don't have years of medical training tbh as I really have no idea what to do but my instinct is to wait as dd was very tired in the run up to both recent fits, and to try to keep her from getting too over tired.
Hard though! He is calling me back friday as I said I need time to think, and in the meantime I am going to call epilepsy action.
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