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Epilespy in Toddlers

(8 Posts)
arsenicandoldlace Fri 17-Jun-11 12:03:20

Please can anyone recommend where we can get a private EEG done for dd? She had an MRI done the other day. It was awful, extremely traumatic for her. We have now been told they are pretty sure she has epilepsy. We have been referred for an EEG but have to wait 3 weeks. I can?t last that long! i just want to know ASAP what we are dealing with.
She is only 12 months old

Thanks in advance.

chuckeyegg Fri 17-Jun-11 19:42:01


pedalpants Fri 17-Jun-11 22:18:30

Sorry, can't help you with private EEG. My son had one done on the NHS and we didn't get the results until a few weeks later, though we got the impression that the results were negative at the time because of the way the sonographer (or whatever they are called!) talked. he wouldn't say outright at the time because they need to 'interpret' the results. You sound really panicked, please don't panic. Epilepsy sounds awful but it isn't the same type of illness that it was years ago in that there are lots of successful treatments and often children grow out of it anyway. my DS does not have epilpsy and his 'non-epileptic' seizures have improved a lot.

arsenicandoldlace Fri 17-Jun-11 22:27:17

thanks so much for for your reply's. I am totally panicked pedalpants. DH mum has epliepsy so the signs arnt good. I hate the wait as my imagination is running wild. DD is having seziures i know that much, but i didnt know you could have " non epilectic " one's.

r3dh3d Fri 17-Jun-11 22:43:29

Sorry to hear the MRI was grim - DD1 was always sedated for hers, and though MAD ANGRY HUNGRY afterwards, otherwise took it on the chin.

Can't help re: private EEG - some bits of medicine are awash with private facilities, but it's usually the diseases of old rich white men, eg heart conditions - private consultants go where the money is. So not neurology so much, though I guess it depends on where you live. You could ask your GP?

Tbh - sorry to say this but there's a fairly high probability the EEG will tell you nothing anyway. The cliché description is it's like trying to do a commentary on a football match by standing outside the ground listening to the noises of the crowd. Add to that the fact that most EEGs are just half an hour and for kids with mild E (and tbh if it's hereditary it's likely to be mild) the chances of anything diagnostic happening in the brain during that half hour are slim. DD1 has fairly heavy duty E and didn't show anything on her first 3 EEGs. The trick is often to do a "sleep EEG" which is harder to get arranged (because they take longer, so cost the NHS more) but far more likely to show results because the change in brain wave going in and out of sleep phases can trigger E-type patters which can be used for diagnosis.

A lot of the time, they take the view that the best test is to give the child meds and by definition if it responds to Epilepsy meds, it's Epilepsy. Diagnosis done. Considering 1 in 100 people have E at some point in their lives, we know very little about it.

How frequent are the seizures (or whatever they turn out to be)? Are they getting worse?

arsenicandoldlace Fri 17-Jun-11 23:34:41

Thankyou. tbh i think she suffers daily. But, that said, she has had two noticable sezuires where her mouth had dropped to one side with exsessive dribbling,and she has rocked her head and rolled her eyes. She has also dropped to the floor suddenly and without warning on a couple of occasions. This has all happened in the last 3 weeks.

Its all rather unbelivable at the moment. cant quite get my head around it. You sound strong r3dh. Very rational. thankyou for your post.

growlybear Sat 18-Jun-11 12:54:01

Hi there we had video telemtry done at big hospital in london last year.This ended up showing lots of seisure activity.It is better because they are wired up for days and are attached to eeg and a video recording is being taken all the time as well so you get 24 hour monitoring.But it is rough at the time although very worth while.

arsenicandoldlace Sun 19-Jun-11 22:38:12

thanks growlybear. sorry its taken so long to reply. My head is all over the place at the moment. Everything is developing on a daily basis tbh. Im going to go to gp tomorrow and show him the footage of dd seziure and beg for an emergency eeg!! If that fails i will look into the video telemty. Thankyou. I hadnt even heard of it! but then this whole thing is new to me.

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