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Reasons for abnormal eeg?(14 Posts)
DD has SLI and a genetic disorder and has had a few "funny turns" that I have always thought were related to her genetic condition but she had a very odd one last year and has been found to have microcephaly (small head-0.4th centile compared with 75th for height and 95th for weight) so with her severe speech and language problems too (they affect her ability to understand too) it was thought she should have an eeg.
It has come back abnormal so she will be having an MRI and neurology appointment as soon as they can sort it out then we will discuss diagnosis or not! The dr said please don't assume it is epilepsy so i have googled to see what else it could be and am now terrified. Anyone else been in the same boat?
Hi used2. This must be so worrying for you, I can't imagine. One of the bad things about the internet is at time like this I believe. As a nurse I have encountered so many people in a state of panic as they have 'googled' and think they or a loved one has xyz, it is very often not the case though.
I would get back on the phone and ask when the MRI will be, ask can you take any cancellations as well, I would also ask to see your dd's consultant asap to discuss the EEG, they have left you waiting and although I appreciate they want to do further test the least they can do is talk to you about their findings now and what their thoughts are at the moment.
Sorry I've not been any help. Hope you get some answers soon.
oh usedto.this must be really worrying. we are awaiting DDs eeg results as well and I am so nervous about it...
is it possible to ring them again and ask for an earlier appointment just to discuss re eeg results?
I would certainly try to stay away from google in this case.
HI, my DS has had a 'normal' EEG but is still being investigated for potetially awful things as he still has funny turns. in some ways getting an abnormal result might have been better as we'd be getting to the bottom of it now. sorry don't mean to belittle your situation which sounds very difficult. FWIW I think that an abnormal EEG can indicate things like absence seizures which are acutally pretty harmless. so try not to worry and try to focus on how she is day to day and get videos of anything odd if possible.
Hi thank you and yes I should know better than the google I just feel I want to know worst case scenario and best but its pointless speculating I know.
The Mri is being asked for as urgent so hopefully won't be long and she said the results will be instant (although will still have to wait for the neurology appointment which am hoping will be quick- she said it will so fingers crossed.
chocjunkie hope yours go ok I was finding the wait so hard too its awful. Pedalpants I do know what you mean and had said on my other thread I wasn't sure what to hope for as the plan was an MRI if nothing was found anyway so this is probably a quicker route in some ways. Absence seizures would possibly be what it is although she has collapsed too and the more I think about it the more I realise she has had odd turns before. The neurologist will be able to link up the brain activity with the speech and language issues/learning difficulties so at least I may have some answers soon.
Just wondering what your DS's funny turns are like?
Just bumping this up as I begin my evening of obsessing over whats wrong!
I have spent hours on the epilepsy website and been through every condition associated with it and a few do cause memory and s and l disorder like dd has. I know its not a good plan but can't help it.
i have my own evenings of obsessing! my DS is likely to have some sort of dystonic condition which is genetic. the good news is he seems to be getting miles better without medication. i imagine it is highly unlikely to be anything like your daughter. the 'funny turns' themselves are hard to describe but they look a bit like narcolepsy, if you can imagine that. he doesn't collapse but he jerks a bit. they don't bother him much and he recovers instantly. my main concern is what it might indicate about the future.
my understanding is that a lot of these 'nervous' conditions, like epilepsy, go hand in hand with developmental delay type symptoms because they originate from problems in similar parts of the brain. So it is not a case of one causing the other, more that they are often co-morbid. like loads of autistic kids have fits of one sort or another.
for me, I actually don't think epilepsy sounds that frightening because loads of kids grow out of it and it is relatively easily medicated these days. but that's easy for me to say because my DS doesn't have epilepsy. his condition is less known and less easy to medicate (I think).
so googling isn't always bad. it can be reassuring in a weird way.
what do your DDs fits look like?
Argh just checking this works as have now replied at length twice and the new system has logged me off before I could post and lost it!
Going to post in short bits as it seems to not like long posts!
Sorry to hear that you are having such a worrying time. Do you know when you will get some answers? Will you have to have an MRI for him?
Poor DD just had grommets last week so now another general anaesthetic but at least they may get to the bottom of it all fingers crossed. I agree about epilepsy not necessarily being the scariest outcome, in fact I think if she has a form which is associated with learning/language/memory difficulties and seizures that can be grown out of I would feel more hopeful for the furture than I have been allowing myself to be. An dit is amazing what can feel like the better option isn't it!
DD has always had floppy lethargic episodes when ill and they can be associated with her genetic condition so I had just managed them accordingly, in fact the hospital had never been concerned about them but now it seems it could be related. Also my parents have said recently her eyes have rolled back a few times in the car but always when she is tired.
Last year she fell to the floor completely randomly, not ill, didn't fall etc. She looked scared so I think she was conscious but she looked paralysed and her arms were at a very odd angle, I thought she'd broken her back for a second. When she could move I put her on the chair and she fell asleep then woke up a minute or two later demanding food.
The only other one was a few days before she got chicken pox she seemed a bit off colour and then asked for a doctor. She then staggered about as if drunk then flopped onto the floor and was floppy. By the time we got to hospital she was fine and in the meantime i had given her emergency meds for her condition so again it was thoight to be to do with that.
it is definitely rather tragic when epilepsy feels like it could be the better option! argh!
we are due for a blood test but there are major problems getting the blood, vein invisible etc.. don't know what to do. were your dd genetic issues diagnosed via a blood test?
No MRI thank god. really couldn't hack that at all. I think the normal EEG ruled it out.
the diagnostic tools left to us are blood test, whichis problematic, video and family history
She was diagnosed at ten days old after lots of tests and had to have bloods done twice a day to begin with it was dreadful. She has always had v regular blood tests and so has rubbish veins. Where did they try and get it from? Its horrible but for dd they usually use the inner wrist or ankle and I have found getting her nice and warm first helps with the veins receding. And also a very good blood taker which generally neonatal doctors are, we have had them called up when others are struggling with dd's veins and they have been amazing at it, just practise I guess. And good play specialists to distract!
Poor you that sounds a long involved process. Its the living a normal life whilst waiting thats hard isn't it. I have no idea how I will concentrate at work, haven't told my manager yet but maybe I should as am likely to be a bit anxious.
I think a good blood taker would have made all the difference. we had two different people who didn't seem very adept at it to me. Next time it will be the registrar apparently (!) thanks for the getting warm tip.
it might help if you have an understanding boss but TBH i haven't told anyone at work because i enjoy having somewhere where its not happening IYSWIM. also DS (3yo) is not especially ill currently and presents pretty normally.
Thats a good point and I am the same in that work is almost a break some days as I can worry about other peoples lives a bit rather than mine! They already know DD has SN and taht we are going through statementingtoo so it feels a bit like whining if I say and now THIS!
I don't know how many tries they had but I now say right you've got two tries and thats it for the day. I sympathise it is horrible, lets hope this one is better at it, I really think it makes a difference, and a reg should be quite practised. Good luck with it!
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