To be so gutted about my son having epilepsy?

[shakingmyfattybumbum]

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.

YANBU. Not at all.

But I think that you need to get all the support you can get to stop you from allowing your son to pick up on how you feel. If you can convey to him that epilepsy and bedwetting and medication is no big deal, he will come to feel much easier about it all, too.

My son, now 22 was diagnosed with epilepsy after a massive fit at 15. When we think back, the aftermath of his fits are very much like the 'night terrors' he had as a child so it seems possible that he had epilepsy long before diagnosis.
We had a few tough years because 15/16 is not a good time to discover that you are even more different from your peers than you thought.
One of the teachers at his school was very supportive and DS was able to go on skiing trips to Italy 2 years running.
He is now at uni, has a girlfriend and lots of friends. They all know that there's a chance he will have a seizure, hurt himself and wet himself when they're out with him but they can see past that and I love them all for it.
I was so frightened at first but I have realised that I have to let him lead as normal a life as possible.
One month after he was diagnosed, our daughter was too, the day before her adoption was final... SS told us we didn't have to go through with it
I suppose what I'm trying to say (in a very long winded fashion) is that it stops being the biggest thing in your life and you live with it, you have to. But I love our our life, even with epilepsy in it.
I hope you and your little boy can come to terms with this and I really hope you get some support.

YANBU. DD1 is 4 and was given a probable dx of epilepsy at 2.10, but not medicated until the EEG report came at 3.1, when we were recalled to the hospital to start Epilim straight away

For DD is it as part of a wider problem, so the epilepsy is almost forgotten about until she has another drop attack, and she seems to be able to avoid those as long as she has her meds upped to the high range for weight each time.

YANBU
Epilepsy is a fucking bastard of a condition. My DS is almost 2 and has had it pretty much since birth (along with lots of other stuff). When they told us that he had a 50% chance of epilepsy and a 50% chance of being blind I can remember thinking 'OK, let it be epilepsy then, coz at least there are drugs for that'
Unfortunately, as you say, they all have side effects and of course, they have to work
I am sorry you are going through it.

But his response to Epilim has been a good one. It is early days and lots of stuff can be done to find the right drug/dose etc. and your son will grow and adapt to his condition.
It may not seem like it now coz it's a big shock, but you will get used to it, accept it and dare I say it, sometimes forget its even there!

You can get a free epilepsy bed alarm from the MuirMaxwell trust - it helps us sleep easier at night.

Good Luck x

YANBU. I was diagnosed with epilepsy at nineteen, and it was a shock and a wrench and a relief for me all at the same time - relieving only because at least I had an answer to what was 'wrong' with me.

What type of epilepsy does your DS have? I ask only because there are so many types and so many medications for all of them. If the bedwetting is damaging his self-esteem so much then you don't have to put up with it - tell your neurologist that it's just as bad in its own way, and they can try him on something else. I was very lucky; I've only been tried on two types of medication myself. Although I still have seizires on occasion, where I am now in myself I've found a 'happy medium'. Lots of others try many drugs before they settle down, and although it is traumatic while you do so, if the long term result is that you have fewer side effects for the same or similar control, it's trauma worth experiencing. But obviously, that is something to discuss with your doctor or neurologist.

Do you have an epilepsy nurse assigned to you? Or is there one who covers your local area? They are much easier to see than neurologists, generally speaking, and know all the information, although they can't mess about with your DS's medication themselves.

His life is not over though, not in the slightest. I used to think that because there was something wrong with me, that was serious enough that people avoided me incase I had a fit (this was during my diagnosis), no one would ever want to get to know me once they found out. But that's not how it works. Your DS will grow up with epilepsy and probably take it for granted. I got to the point where, despite having several seizures a day at its worst, I viewed it as a nuisance as much as anything. I can't drive: drat. I can't bathe my DS without supervision: grr. I have to take these dratted tablets every day for the rest of my life and declare it on every job application: frustrating. The thing is, when you've had something for a long time, you grow accustomed to it, and you find ways of working round the obstacles. I can't drive, but I do get a concessionary pass for the bus. I can't bathe my son alone, but my partner has a greater role as father because he has to be there all the time.

The early months are the hardest. I had days where I cried, even as I told myself it 'could be worse'. I even had days when the fits were less when I felt guilty, as though I were a fraud for getting off 'lightly'. It's shock, and it's pointless beating yourself up over it because it's a perfectly natural reaction. I'm over that now - not because the epilepsy has gone away but because it is still here, and so am I. In time, you and your DS will find a coping mechanism and you will begin to 'make do'. And after a while you will be so used to making do that you will quite possibly honestly be surprised if people make a fuss about it - I know I am. Like the time I was having a partial seizure and a semi-hysterical woman was desperate to call an ambulance, and all I could think was 'Don't do that, I'll miss the bus home!'

I promise you, the shock will wear off. You will possibly never lose that wistful 'what if', and there will be moments that try your patience and your stamina, but you will grow strong enough to cope, and so will your DS.

Just wanted to say thanks for all the lovely messages. You have given me a lot to think about. Cheers.

I do hope we have made you feel a bit better. When a child is diagnosed with whatever issue, it is an incredibly emotional time. What could I have done, is it my fault, mourning for the present and future they will not have...that is completely natural. And you should never feel bad about feeling all of that.

But I think as parents our duty is to contain our own desolation for the sake of dcs. Yes its crap. But it is not the end of the world. They will have a different future to the one we imagined, but it is not necessarily a worse future. Its just different. And often they will lead the way out of the desolation, just by being themselves.

Big hugs.