seizures during sleep

[red37]

Ds(4years old) is currently being investigated,EEg is booked for Friday, his first seizure was in August, he has had 3 seizures and many staring spells, he also has mri booked at he end of the month.
When we had intial assessment with epilepsy nurse, she seemed to think that ds seizures may be related to tiredness as they happen towards the latter part of the day.

I think he may be having them in his sleep, as he jerks especially the one left arm, eyes appear to roll back...ds sleeps with me atm as I have been frightened of him sleeping alone since his very first seizure
SIL suggests I video a seizure and show this to epileptic nurse(she has temporal lobe epilepsy)

Anyone have any advice?

thanks

Hi red- just noticed your post. Am logging off for tonight but will be back tomorrow - DS has epilepsy which started with night time seizures so I know what you are going through! We have done the whole MRI, EEG, video telemetry, PET scan, three different meds thing and are still no closer to finding out why he is having seizures.

You must video all that you can as you will go round in circles telling the same story until they catch one themselves(or not) Keep a diary as well (we are rubbish at doing it) so when you get an appointment you remember all the important things which will no doubt go out of the window once you are in there.

Will have a look tomorrow to see if you have posted .

Thanks for the replies
Riven ,had EEG today and ds had several staring spells whilst being monitored and videoed, mri is in 2 weeks time, nurse said we will get all the results after the mri scan
must ask nurse for night EEG

The nurse asked whether ds had problems at birth, oxygen starvation etc and I told her he was delivered by c section and he was pulled out by forceps, could this be a possible cause of epilepsy? ds had 2 forceps marks on both sides of head when born which we complained to staff about, we have been asked that a few times by the health proffessionals about his birth

Thanks fatzak, what is a PET scan?
I am writing things down as we go along, dh forgets to tell me of staring spells etc, dh said they were walking the dog with ds the other day and ds just stopped and went into a vacant look and dh called him 3 or 4 times before he answered.
I am going to place things in a diary and put down questions we want to ask when we meet the nurse specialist

Red37, have the hospital explained why they used forceps during the c-sec?

Not a clear explanation apart from I had placenta previa and they needed to use them as they had difficulty delivering him without them, is it unusual to use forceps during a c section?
tbh the whole hospital experience with ds2 was an awful one, they sent me home after a major bleed, one consultant was prepared to let me give birth naturally and if it wasnt for one consultant moving ds2 to one side and placing scanner under my abdominal a little further , that is where an extra lobe was found attached to the placenta(I thank her dearly)this was causing the major bleeds
whole new thread

sorry for the rant