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Anyone caring for someone with epilepsy? - Page 4 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
Hello Maryann,

thanks for the info unfortunately we cannot be provided with H2O our PCT won't let the GP's prescribe it!! The dietician can't do anything about it post code lottery one can safely say.

Cubby was horrible for my daughter too mickey buttons are more expensive but nicer we have to sort the over granulation first hope to get the new one in June.

Beautiful sunny afternoon here.
BFN Sandra
Hi I care for my husband who has nocturnal Epilpsy (sleep seizures)
Nobody sleeps much in our house!
He has a usual pattern of 5 tonic clonic seizures a night but since december he's had a lot of problems escalating the seizures to 30 a day. Image

He had an underlying infection (undetected pneumonia) which was the trigger of the increased activity, things are getting better...slowly. Image
We're stuck at around 15 seizures a day/night for now but it's moving in the right direction at last thank God! Image
I've been caring for him for what seems like forever - over 20 years although I think the last 5 months have definately been the most hectic.
marie
My daughters been epileptic since she was a baby, & used a few different medications currently she's using Gabapentin & Carbomazapine which I believe is another name for tegratol.

These two working togther control her epilepsy better than any others, I have found she put on weight with them, & has more body hair (very hairy legs & arms) which I believe is a common side effect, & has disturbed sleep patterns as another side effect.

My daughter has more than one type of seizure, she has full blown tonic clonic (well controlled now with these meds) she also suffers complex partial seizures drop seizures & abscences, apart from the abscences the rest are under control.

With out the meds she has cluster fit attacks & has been rushed into hospital more than once going from fit to fit, most she had before they totally knocked her out with meds in hospital was 20 in fast succession, she suffered some damage to the memory & fine motor skills areas of her brain from that cluster fit attack.

She can never tell when a fit is coming or when she's had one but her triggar that alerted us was either she'd say she could smell raisins, or keep looking behind her& turning round a fit or a series of fits usually followed within 24 hours of any of these signs.

My son also suffers epilepsy but his is usually triggered by his blood sugars as he is diabetic, they are quite frequent as he refuses to control his diabetes, he is supposed to take tegratol but refuses to take it & often refuses it inject or eat too!
Hi Onyxx my daughter has epilepsy as well she also suffers from Autism and cerebal ataxia her seizures where really under control until she went into puberty and then they went haywire a bit more settled now she is on same meds as your daughter she has complex partial sezures and a lot of absensce attacks as well on the whole l would say its controlled but she always smells burning before a seizure
Take care everyone
Jeanxx
Hi jean a trigger smell seems to be very common with complex partial seizures, my daughter can still be on her feet & talkin to you (though not making much sense) when she's having a mild one.

Thankfully unless she's ill she is very well controlled, her continence problems are the real bug bare at the moment, she's going into hospital for a few days shortly (or should I say We) theyre going to test her again for diabetes insipidous ( not sure if thats right spelling) her kidneys dont shut down through night they seem to go into over drive:( meaning heaps of washing & clean bedding etc, because the nappies just cant cope with it even the most absorbant ones.

She has never been dry, thankfully it's only bladder problems, though it was both ways when she was younger, as my daughter came in to puberty her specialist upped her medication levels to try & combat her controll being lost & it worked well we did have a few but not as many as we would have had with out her medication levels being put up.

We often have problems with severe eczema under her nappies though & she was allergic to some of the creams, we finally found one that works & thats under control again now, we were sent up to newcastle general for skin tests to try to control the eczema because it was painful, looked & felt like she had been scalded on her lower back tummy & thighs.
Hi Sue - has anybody told you about diabetes insipidus? It's comparatively rare and nothing to do with diabetes mellitus (sugar diabetes)

The two are named similarly because of the symptoms involved - both conditions often lead to excessive peeing. Apparently, the "test" years ago was the smell of the urine: a sweet, sugary smell was diabetes mellitus (literally honey diabetes), hardly any smell (and therefore "insipid") - diabetes insipidus. I'm so glad they don't use that test these days. Image

I've only ever spoken to one person with this condition, about a year ago.

There is some information out there but it's limited and so far what I've found is very technical: I understood about one word in 4. Image
Hi charles they tested my daughter for this when she was 1 & again when she was 5, ive had to really dig in & fight to get them to look into her continence problems at 15 she's still in continence underwear day time & nappies at night & she's in main stream school, although she has problems she's worked hard & is taking exams & going to college 1 day a week something they said she'd never do.

She has had a lot of stick over the years because of her continence problems, thankfully much of it went over her head, didnt go over mine though Image with the array of meds she takes her urine smells very strong, & by mid day she needs to change in shcool at home she changes more frequently & baths twice a day, this problem closed a lot of doors for her school trips where she stays overnight are a definite no no, she managed a couple when at primary school thanks to a very understanding teacher, who hid her problem from the other kids.

At least if they find out it is this condition they should be able to so something to treat it I hope.
You should be really proud of her and of yourself that she's doing so well.
hi my son sam has seizures which he takes tegrotol and keppra for his seizures are quite bad
he also doesnt know when they are going to happen and has to go to A & E most times after a seizure.
sam was diognosed jan 06 with a brain tumour he went yesterday for a MMR scan to see how the tumour is doing were just waiting for the results?
this is the hardest time for us all WAITING???
hope to talk again soon
kaz xx
sams mum
Hi Kaz it must be so difficult for you and l realy hope that you get good news from the recent tests that your son has had what can l say but try and keep positive l know it must be hard but just hang on in there

take care
Jeanxx
96 posts