Mums of kids with epilepsy

[shakingmyfattybumbum]

How long did it take you to come to terms with your child's epilepsy?

DS1 is 4 and got diagnosed with epilepsy in Jan after collapsing and having a TC (brief) in the snow on Christmas Eve. He has had night seizures since he was a baby but 3 consultants dismissed our fears as it was hard to diagnose him (all tests clear). The daytime seizure on Christmas Eve was the one which clinched his diagnosis.

Anyway, he is now on 15mls of Epilim a day.He has had 2 further nocturnal seizures but no more day time ones.

In every other way he is a normal child. He is tall, handsome,happy, outgoing and bright. However the Epilim is making him tired and bad tempered in the afternoons plus he has started wetting the bed a lot (side effect of the Epilim).

Last night he had already wet the bed before I lifted him to go the the loo at 1am. I didn't tell him off at all but this mrning he was punching himself in the willy and saying 'Bad willy'. There is no 'cure' for the bed wetting. It is a side effect of the drug.

Last night I lay in bed and cried for the life my son now has compared to the one he used to have.

Not only has he got the tiredness/bedwetting to contend with plus now we are going to start waking him twice a night to go for a wee, but also there are so many things which will now be a problem for him. How can he go for school trips etc? Also the consultant told me about SUDEP so I have to go and check on him several times a night as I am so terrified something will happen to him.

Most people (including my family) have had little or no reaction to my son's diagnosis.Their attitude is that 'You can get tablets and it'll all go away'. I am devastated but can't even show it as I have to remain positve for my son's sake. I just can't seem to get my head round the epilepsy and the bed wetting is the last straw.

It seems like an awful trade off - bed wetting in return for no seizures. The consultant wants him on Epilim as it is working (down from 16 nocturnal seizures a month to 2 and now that his meds have been upped, fingers crossed he'll be seizure free). I don't know what to do/think.

I emailed Epilepsy action to see if they ran kids/parents support groups but they didn't even answer. I feel utterly alone in this. I love my son so much and feel like I am carying this burden alone. When he was diagnosd my mother didn't even reply to my text and most people don't understand about the side effects of the meds etc.

Sorry to have rambled on but I feel very low today. Any positive words would be greatly appreciated.