Epilepsy parents

[crispsahoy]

My dc10 started having seizures in December and was diagnosed in April, starting medication.

Every time I feel like things are settling and I can maybe let him do a little bit more, bang another seizure hits.

How do parents deal with the sitting and basically waiting for the next one to come? I feel lost and lonely with it. ( dread to think how dc feels)

Hi, my DD 14 was diagnosed around 6 months ago. It is such a frightening condition for everyone especially your DC. I really struggle with it myself and dread my DD going out anywhere. Hopefully things will improve for your DS now that he’s on medication, stay strong

Sorry he's been on medication since April. I feel like we've just been given medication and sent off. Thank god for his consultants secretary! She has been a fantastic help.
We're now being prescribed the rescue medication which is a little scary.
It's like whole life is just sitting waiting for the next. He's had 3 in last 5 days.

I also find myself watching the other dc's just incase.

Everything my daughters friends want to do always have risk ie water/theme parks.
I know a lot of children that have seizures and they just randomly stop as quickly as they started. Do you know what is triggering the seizures?
How do you cope with it all op ?

My eldest daughter began having seizures at the age of 8 and ha s been on medication ever since. She tried coming off the medication at 17, under the supervision of her consultant but after 11 months without a seizure, she had another. It's hard but you just get used to it. She's now 26 and lives alone. I don't think she'll ever come off her medication.

Honestly I just keep him in, he's not and never was the most active kid. If there's not a screen involved he's not interested. He enjoys things when we get him out.
I feel like his friends are too young to deal with the responsibility of calling if something was to happen.
I think the plan is if/when he gets to 2 years seizure free they try to take him off his medication but I don't think he'll ever get off it.

He doesn't seem to have a trigger, we had been thinking tiredness but now I'm not sure. Does your dd have triggers @Muckingfuddle123 ?

Should I be concerned about dc's memory?? Obviously around a seizure I can understand but I find I'm having repeat a lot.

An example, So today we discussed a meal plan together, myself and 2 dc's, decided chicken Kiev for tonight. Did shopping around 12, home, did whatever then around 4:30 he asked what we were having for tea, chicken Kiev. Then around an hour later he said I can't remember what we're having for tea!!!

Things like that are happening quite often but I don't know if it's disinterested 10 year old or something else???

I have been in hospital for 2 weeks now with my child who has epilepsy. His seizures are out of control and each night I am sitting here watching them one after the other. We are in for a chest infection but the seizures are really bad at the moment as well.
He has just had rescue meds again tonight.
It is hard at first but all I can say is it becomes your new normal and life settles into some kind of normality.
Do you have any real life support ? I think it helps to talk to other parents.
Other than that we just enjoy the good times and ride out the bad.
Sorry you are dealing with this . Epilepsy sucks .

Memory problems are well known with epilepsy:

www.epilepsy.org.uk/info/memory

Oh and yes he will struggle with memory if he is having a lot of seizures . It can cause mental confusion in the post ictal phase and extreme tiredness . He will recover with rest

Though he may always struggle to some degree with memory etc ( sorry posted too soon )

Try posting the link again:

www.epilepsysociety.org.uk/how-epilepsy-can-affect-memory#.W3H0m3rTWhA

Sorry you are going through this. Epilepsy is awful. I am just off to bed so i will reply properly tomorrow. My ds is about to turn 13 and was diagnosed at 15 months old. We've had lots of ups and downs!

Oh @flapjackfairy that sounds awful hope he improves soon. Ds's don't seem to be linked with illness but he's not an ill child other than the odd cough/cold for me to know.

Today is day 13 free after 3in 6 days. I'm convinced by his behaviour and attitude we'll have one this week though. So don't the memory is post ictal as much as just a side affect. Saying this I do think he has them in his sleep sometimes.
I'll look at that link thank you @LadysFingers

I get his rescue medication and training on Friday. Roping in as many of the family as I can for that and will hopefully get another session for school and the other family members.

I have my family in rl for support but don't know anyone going through the same or similar, there doesn't seem to be any support groups.