Ds been fitting

[roundthebend4]

Ok need some help advice handholding all 3

ds has been having small absences for a while but these have been increasing but Sunday ds had 2 full blown fits was admittered. But then allowed home Tuesday

Today he was fine in morning but fitted while we was on the train so were back in for obversation

ds did have EEG 18 months ago but this was clear but then they did struggle to get him to look at lights hence why till now not treated but there now talking of how to treat but am lost know nothing about this

no experience but thinking of you both. get well soon.

My DD has had epilepsy since 4 years - she's 8 now. We didn't realise epilepsy to begin with - thought she was daydreaming and lost her hearing after tonsillectomy (her nursery teacher's diagnosis). When she started school her reception realised that it was absence epilepsy, but within a few weeks this had deteriorated into a form of tonic- clonic seizures ~(not typical grand mal), but like your DD they were lasting for hours and running into each other.

She did this for a few weeks but then went back to just absence seizures during the day and we think myoclonic jerks at night but not really sure what they are.

She still is uncontrolled with absence seizures but we've had no further tonic-clonic seizures since this period (3.5 years ago). We had MRI etc at time as thought something sinister due to deterioration but it was normal.

Hope this is just a passing period for your DS too. DD's eeg showed lots of sub-clinical seizures and she does have clusters of absences if exposed to viruses in classroom - is your DS unwell or been exposed to another child with a virus? Gt Ormond ST put DD on prophelactic antibiotic which has helped enormously.

Hope all goes well with eeg and MRI and that you DS's seizures become more controlled.

We're also changing DD's drugs at moment (she's been on Carbamazepine and lamotrigine but some concern that this combination may be exacerbating her seizures.

Sorry for rambling, but just thought it may be helpful to share DDs similar experience with you. Still remember how frightening it was at the time.

Best of luck. Will be thinking of you and your DS.

Well. Reports in and looked at and ds now added Epilepsy to his collection of dx apparently seems to be centered around the frontal lobe

I was kinda expecting them tell me no it's nothing just one those things and it's left me feeling odd

Seems he's been having abnormal brain activtey for some time and might part explain the detoration

sorry that he's ended up with the epilepsy dx, I hope once they get treatment set up for that that things improve for him.

I agree.
Sorry about the diagnosis, but now they can treat him and things will improve soon x

They have started him on eperlim but said they will likely need to increase it over the next few weeks

There so matter of afact about it but right now it's just to new and hate not knowing or understanding anything about it or what I need to look out for

do they have any specialist epilepsy nurses they can refer DS to? as they tend to be somewhat more approachable than doctors, open access in terms of phoning up with queries/concerns? other than that - the matter of factness is unfortunately inevitable - professional detachment and all that that - but they should be telling you more about what to look out for, as you need some sort of plan as to what can be managed at home, and what needs medical attention immediately.

there's some info for parents on the epilepsy action website, but you might find it a bit basic....

www.epilepsy.org.uk/info/parents.html

We been sent home with epierlim and see someone next month neurologist ds is already under And been told ds is likely to fit again as dose might need tweaking

Trouble is ds gave no real indication that was going to fit and since he can't say anything to indicate either

What point do I yell for help if he fits what signs should I look for any pointers