So DS has epilepsy what should I know?

[loflo]

After a pretty awful few weeks (due to crapness of local hospital) DS eventually got moved to a specialised childrens hospital and has been diagnosed as having frontal lobe epilepsy.

He has started meds (tegrotel) and getting on well with it. No seizures since meds started.

Had an eeg which was apparently "all over the place" according to the consultant. He was having an obvious seizure every half hour on the dot but in between there was still lots going on in his wee head

So we are having an MRI next week and should get results of that within a week or so. Don't even want to think about that at all.

Very unusually I feel a bit lost and unsure of what to do next. Or do we just carry on as normal...... I just can't believe that a child who already has had a pretty crap start in life (we adopted him when he was a toddler) has now more to accept and deal with (gulp). Trying to be brave most days but not sure I am succeeding. Any info/ideas would be really welcome.

TIA

loflo, sorry. It is so hard. We got our Dx when DD1 was 3.1; MRI followed and revealed the reason.

You just need to take it day at a time. DD1 started on Epilim and was well-controlled for about a year. In January behaviour started to decline, and we've spent the last few months trying a couple of new meds.

i was in right muddle when ds got his dx recetly after going into status couple of times and was not told when i should ask for help and when its ok to let him fit and observe,

but after speaking to few people on here followed advice and asked neuro team for a action plan now thats in place am lot calmer about what to do .And can say if were out no we dont need a ambulance or yes call one now please

Thank you all for your messages. Its just all been so out of the blue. DS was deprived of oxygen as a baby (wanker birth parents tried to stop him crying by putting a pillow over his face....) and we knew that there had been some brain damage so this looks like the most obvious cause but mri will tell us more.

DS has coped so well and I feel like I am letting him down by not. Think you are right lou it has to be one day at a time.

Thanks again,

loflo

Hi Lofo - DS has epilepsy too and I know just how hard it can be. It's great that the first drug they have tried is working as that is a major plus for you if you don't have to try drug after drug like lots of us have had to.

Have you looked on the NSE epilepsy forum? There's a section for parents but it's quite slow moving so you might have to wait ages for someone to reply to a post! There is lots to read though and I always find it useful just browsing through other people's stories! I had a very strange moment the last time DS was in hospital when I realised that a woman I was talking to was a poster on the forum - her story suddenly started sounding very familiar

Good luck and don't panic!

Thanks Fatzak I have posted over there too. If I had any energy left I might panic right now its just tears. MRI tomorrow so fingers crossed DS can stay still without GA. Time will tell!

How old is your DS Loflo? Good luck without the GA - we have always had one as I just can't imagine ours would stay still

Hey fatzak - DS is 6 (and a half - very important that half - to him anyway!!)- how old is your DS? Has he had epilepsy for a long time?

DS is just 7 loflo. He started with very tiny "jerks" when he was about 2 and half, but we didn't begin to imagine it was epilepsy. He had his first big tonic clonic when he was almost 4, then was pretty much under control for a while. This last year has just been hell - things went down hill over Christmas and he spent eight weeks on and off in hospital between Jan and May He started with absences which soon became prolonged and he ended up in non convulsive status - for weeks on end He's been on the ketogenic diet now for six weeks, and whilst things aren't perfect, they are a million times better than they were He's back in school full time which is fab as he didn't go at all between Jan and April

Hope the MRI goes well and gives some useful findings.

Oh fatzak that sounds so crap for him. Its so difficult to see the impact it has. Glad the ket diet is helping tho.

MRI went well today - I didn't realise it was lots of different lengths of scans done at one time the longest of which was nine and a half minutes but DS bless him managed to stay still which is a miracle. Now we just have to wait for the results and hope that there is nothing else going on in his precious wee head that we don't know about.

Fingers crossed for continued improvement for you at your end - do you use the NSE forum too?

I don't tend to post to be honest loflo - think my name on there is mrshal