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epilepsy in toddlers

(13 Posts)
arsenicandoldlace Fri 17-Jun-11 11:47:25

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 sad

Thanks in advance.

quietlysuggests Sat 18-Jun-11 10:56:58

Message withdrawn at poster's request.

arsenicandoldlace Sat 18-Jun-11 19:30:45

thanks quietly i posted this on sn also as there didnt seem to be much info on this one. But, sorry what is tomic-clonics? This is all really new to me. we have not be given any info as yet. I think they are waiting for the EEG. I carry a camera around all the time at the moment trying to catch the seziures.

flyingintheattic Sun 19-Jun-11 13:39:55

I think quietly means tonic-clonics which are the 'typical' seizure involving lots of violent shaking.

Riveninside Sun 19-Jun-11 13:46:05

The nhs will do an emergency eeg if its warranted. Dd started sezires at 11 weeks old, we were told it was definately epilepsy and an eeg would confirm what type. I think the wait was 3 weeks. Later that day she had a massive seizure and we went to a and e and were sent for an emergency EEG which confirmed infantile spasms, a serious type of childhood epilepsy.

How often does she have them? What do they look like? Theres many types, some serious and some benign.

Riveninside Sun 19-Jun-11 13:47:17

Oh, and theres always a wait for it to be 'read' childrens eegs are nothing like adults and an experienced paediatric eeg specialist will need to read it.

arsenicandoldlace Sun 19-Jun-11 21:06:18

Thanks Riveninside she has fallen to the floor a few time's suddenly and without warning and there have also been a coupe of incidents where her mouth has fallen to one-side and she dribbles excessively, this usually happens when she wakes up from a sleep and she becomes distressed. she also quite often moves her head from side to side. It hard to distinguish what is usual from unusual some of the time, however, the incidents where her mouth has dropped not hard to distinguish.

Yesterday, i filmed her whilst she was on the floor. She suddenly stopped what she was doing and rocked her head from side to side and looked " not there " it lasted about 5 seconds then she just continued as normal.

Its really frightening to be honest. I dare not leave her for a second.

Riveninside Sun 19-Jun-11 21:30:24

Drop seizures can be scary to see sad. She might have to wear a helmet to protect her head until meds get them under control. My dd has severe epilepsy (lennox gastaut syndrome) butbthey are now fully controlled with the ketogenic diet.
The others sound like simple partials.

They might do an mri as well to see what could be causing them. Good luck. We are seven years into epilepsy so if i can answer any questions i will.

arsenicandoldlace Sun 19-Jun-11 22:01:27

they did an MRI on wednesday. it was awful, really traumatic. She had that awful sedation medicine. I did nt realise how loud tht where it was a shock. Thankfully she didnt really wake up. they said the results where ok. i was so relieved as i thought she had a tumor or something.

I am really in shock about all this tbh

arsenicandoldlace Sun 19-Jun-11 22:18:10

Your dd must be so brave.
If you have time can you tell me what the ketogenic diet is? or, if there is a website about it?

I cant find the right words at the moment. Head is a mess.

Riveninside Mon 20-Jun-11 09:12:55

The mri would be to check for brain damage or abnormalities that trigger seizures. My dd has brain damage so we know the cause. She had two very hard to treat types of epilepsy and we tried various medications. The ketogenic diet was our last resort. Its a high fat, medically supervised diet for hard to control seizures. Two days after we started all her seizures stopped. Now she only has one if she is sick.
Your paediatrician would not go for it first but start with drugs. Usually epilim. Its finding the right drug, at the right dose with the least side effects.

arsenicandoldlace Tue 21-Jun-11 20:37:51

thanks RIVENINSIDE. We have now been referred to an epilepsy nurse. I hope they dont just do that if they think the mum cant cope??? I get the feeling it can be a long journey to find the right meds. Im not looking forward to it! Im so glad the diet worked for your dd, that sounds amazing.

soozbie Wed 22-Jun-11 09:41:12

The referral to an epilepsy nurse will be useful - not all NHS hospitals/areas have them so it will be someone to keep in touch and discuss things with.

My experience has been that where seizures start before the age of 2 the investigations are usually done pretty quickly. My dd had a very serious long lasting seizure when she was 13 months and she has had several seizures since - we have had EEGs, an MRI and lots of appointments with Great Ormond Street since then. We managed to get a referral to GOSH because of their specialist epilepsy unit. You should definitely be seeing a paediatric neurologist - not just a paediatrician.

Have a look at some of the epilepsy websites - they contain lots of info and some have forums too.

I hope you get some answers quickly. I know how worrying and scary all of this can be.

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