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.

By the wya, re the 'not being able to go on school trips' comment, I meant because of bed wetting rather than seizures.

It's perfectly normal for a parent to feel devastated when their child has a disability or medical condition, major or minor, that affects them. You feel upset for them and angry at the condition and the effect it has. It's only natural. I would imagine that there are quite a few support groups out there. It's a bugger that the group you approached haven't replied yet - perhaps your email went to their spam folder? Have you got a phone number for them?

for the time being, why not try him in big boy night pull ups? This might help with his self-esteem, and save you having to get up in the night and disturbing him.

You are completely entitled to feel awful, but I do think it is important that you remember those are your feelings, and your ds might pick up on them and feel negatively about himself.

Have you tried explaining it to him in a different way? Perhaps say that lots of people still need to wee in the night at his age (and indeed, my ds was still in pull ups until 5).

Ifelt terrible when ds was finally diagnosed with dyspraxia, but now it seems to be fine, as he has a reason for all the things he can't do, and knows its not about him.

I don't think 4 is too young to explain, very simply, that mummy and daddy and the doctor are making the seizures better (if you have a word or phrase for them) and that weeing at night is no big deal, but it is a because you, as adults took that decision so it is not his, or his willies fault.

Try reframing it like wearing glasses. Not all the bits of our body work properly, and wearing glasses is an okay thing to do.

DH is more experienced in this, so I will get him to readyour post and reply later, however in the meantime...

Epilim is not the only anti epilepsy drug available. I'd suggest that you make an appointment with your consultant again and discuss the side effects and effect that they are having on your child again. Though I can understand why the consultant migh not be happy at this stage to change the meds. Epilepsy meds are hit and miss. It can often take a while to find one that works. When he is older I am sure they will be happier to change them if he is still experiencing this side effect.

DH takes epilim. I think he is on about 30mg per day and he doesn't have his side effect so perhaps it is something your ds will grow out of.

There are support groups. The best way to find one would be to call into your local epilepsy charity shop. They usually run them.

But YANBU. It is entirely natural to feel distressed when your child is diagnosed with an illness/disability.

YANBU - it sounds like a very upsetting time.
I have epilepsy (not fully controlled) and know how frustrating it can be.

A few thoughts
It is early days, so the tiredness from Epilim may wear off a bit.
Could the bedwetting be nocturnal seizures?
Is it worth exploring other meds - there are so many now, lots have less severe side effects than Epilim.
You can also get alarms for nocturnal seizures, worth looking into (although I understand they will go off incorrectly at times).
There are lots of online epilepsy forums, why not do a search and find one with a good parents section? Maybe forum4e, though I haven't looked at it a long time. Also ask at the hospital about groups.

Sorry, bit of a ramble, but hopefully some food for thought too.

I'm probably not much help, as I have no experience of epilepsy, but I do have a ds who has recently been diagnosed with ASD and know that its very common to go through a sort of grieving process for the life you thought your child was going to have when/if they are given a serious diagnosis of any kind. I know I did.

It takes time to process, but eventually you come to some degree of peace with it and start seeing things a little more positively.

We are in a similar position with lack of family support as dh's family don't believe ASD exists, so we haven't been able to discuss his diagnosis with them at all and its led to quite a few tense situations where they have handled ds really badly.

I understand totally your concern about school trips etc, but he has a few years to go before he would be going away overnight with the school and there may be some options you are not aware of that could mitigate the situation. I know there are some tablets that persistent bedwetters can be given shortterm to reduce urine output and these are often given to children going on school trips. I don't know if he would be able to have them with his medication but it might be worth asking at some point.

I am just the same, already fortune telling and panicking about senior school while my boy has only just gone into year 1 in juniors.

Anyway, like I said, I'm probably not much help really, I just really felt for you and wanted to let you know there are people who understand.

Also, have you thought about posting in the special needs section as there are some lovely, lovely, people there who have a wealth of knowledge and experience. I know one or two of them are pretty knowledgeable about epilepsy.

Hope someone more helpful comes along soon.

I don't have any experience of epilepsy, but do have an older bedwetter, dd1 who is nearly 12. This hasn't stopped her having sleepovers or going away on Brownie and now Guide camp

In our case dd1 is now medicated for the bedwetting, but this has only been for the last 3 years. Before that we tried lifting her and to be honest it was a pain and didn't help at all with night training. The enuresis specialists we see recommend that you don't lift a child at night as it doesn't help long term.

Would your ds be willing to go back into nappies? or pyjama pants? (basically nappies for older children) you might find them much easier than all the lifting and it's so much less stress than keeping up with the wet sheets to wash.

I don't think you're being unreasonable at all. Getting a diagnosis of an illness or a condition that will never go away, and which necessitates lifelong medicating, is a big deal, and it is hard to cope with. It can take a long time to accept and come to terms with something like that.

And I totally understand what you are saying about the horrible trade-off between side-effects and symptoms: I think a lot of people dismiss side effects (especially in instances where the condition being medicated is a serious one), but in fact they can be very difficult to accept.

Given that he was only disgnosed in January, this is all still very new. I think it's entirely natural that at this stage you are struggling to come to terms with it. It would be weird if you'd accepted it completely by now. It will get easier with time - honestly, it will. Have you thought about joining an online forum for parents of epileptic children? (sorry if that's a really obviousl suggestion). I know it's not the same as meeting other parents face-to-face, but it might be some help?

And maybe it would help if you could have a chat with your mum and other family members who don't understand the implications of your son being on epilepsy meds - perhaps if they realised that it's not actually as "take a pill and it all goes away," they might be a little more supportive?

OK took so long to type that with my three monsters angels vying for attention that help came along in the meantime.

Please, feel free to ignore me.

Also see if there is an epilepsy nurse in the department, he or she might be able to give extra practical support.

yanbu to hate epilepsy
it is horrid.
but don't give up hope dd (touches wood) has been seziure free for nearly 3 years.
there are a lot of people who deal with epilepsy everyday on the sn topic.
I am sure thay will be on this thread soon

YANBU at all - it is a limiting health condition and you are bound to feel sad that your DS is limited in any way. But - it can largely be controlled and as medical advances continue, there are hopefully always going to be new avenues that might improve on what he has at the moment. I don't know anything about epilepsy meds but what Shiny says makes sense - worth asking at least.

And try phoning the Epilepsy support group if they have a phone number - I don't know why but emails seem to fall by the wayside a lot of the time.

And have a ((hug)) - seems like you're lacking a few in RL that you should be getting.

Thanks for all the rapid kind messages. Re pull ups, I know it would really upset him to go into any nappy type thing. I also know we can't train him out of the bed wetting as it isn't normal bedwetting; it's the epilim interfering with his brain/nerves.

We don't think we can use a bed monitor as he is 23kg which is too light for most alarm systems plus his seizures are very brief (about 5 seconds) and silent. He doesn't bed wet with a seizure or bite his tongue etc so no other signs.

YANBU.

I don't have a child with epilepsy but my mother developed it last year,though we're still awaiting an official diagnosis and I understand what a hellish condition it is to deal with, even when people are on medication.

I think it can be difficult to understand if you don't live with someone who has it. Until my mother developed it I didn't fully understand just how awful and complex a condition it is.

There are a number of parents here with children who have it, but also please join these forums Coping With Epilepsy which has a section of the forum specifically for parents of children with epilepsy, though the general forums are useful too.

There's also The Epilepsy Society forum which is UK based.

Epilepsy Scotland were extremely helpful when I called them about my mother. I know you aren't in Scotland but I notice that the National Society for Epilepsy have a helpline which may be of some use. Helpline: 01494 601 400

Riven, how is your DD getting on with the ketogenic diet? Has it worked fully for her?

My sister has two dcs, one has epilepsy,tourettes,adhd,autism and gdd.

The other has autism, gdd, epilepsy and adhd, I don't know how she manages but she does, you will adapt and learn to live with the condition.

Have you asked about medicatioin for the bedwetting,aggression etc ??

hi shaking, no YANBU

I am another one here with a child with epilepsy (and the attendant bedwetting that goes with it).

have you seen this:

www.roalddahlfoundation.org/Default.asp?PageID=20

the roald dahl foundation fund specialist epilepsy nurses, we have one and she has been wonderful - someone to chat to about anything/everything. it's via the nhs (apologies if you're already aware of this).

to second what others have said, perfectly normal to feel gutted: easier said than done, but try to ignore anyone who doesn't acknowledge how you feel! Hope you feel better soon, x.

Would some of the more 'pant-like' trainer pants be better for him perhaps? Less like disposble nappies and more discreet.

They have a few different ones here.

I wondered if the boxer-short style ones near the bottom of the page might seem further removed from nappies for him.

There's also another forum for parents here

It is upsetting and confusing for any medical diagnosis and I think in that regard YANBU. But I have to say I feel you a being a little bit U as it is a new diagnosis and please try not to pass on your feelings to your son.

I have epilepsy, mostly controlled, still have night seizures but I lead a great life. I lead a full life. I take my tablets and it is good.
Before medication, the seizures were terrible but I aclimatised to the drugs (not so sleepy) and it worked itself out .My first drug was Epilim and it made me very tired for about 2 months so maybe your son will even out and if not your consultant should explore other ones which also give seizure control with the least side effects.

When I was diagnosed I was a teenager and my mum told me my life was over. That I would stay with her and be looked after. I did not stay. Of course there are many varying degrees of epilepsy and I thank my lucky stars that I am mostly controlled and no more TC's when awake. Do not be too scared by SUDEP, the consultant has to tell you about these things.

I don't want to be harsh, I just want to say it will probably be ok.