Nocturnal epilepsy and incontinence

[Steph]

Hi there everyone. Last time I was here was 9 years ago when this all started - I think it was the Brain Forum then. I am mum with a 15 yr old teenager, Emma. Emma was diagnosed with epilepsy when she was 6 and after a lot of trial and error we found that Keppra controlled her seizures.

Since last August she has become more and more incontinent at night and she has started having major seizures about a couple of hours before she wakes up. docs don't want to up the meds or change them and say they think she is exhibiting distress so this is mental health not organic health.

Does anybody have any thoughts. Last week by the time I got to her she was blue and we nearly lost her. Surely nightime epilepsy this severe must have an organic cause. I have been advised to talk to her neurologist but wanted an extra view from you guys before I put together a letter. They don't seem to be concerned that she was blue

[Rae1889]

Lots of people go blue during a seizure and just after. The body takes all the oxygen in the blood and send a it to the brain to protect it, so the rest of the body, mainly the lips, ears, eyes, fingers and toes, go blue.

Its actually unusual for someone to be able to maintain their oxygen levels while seizing. I do at times because my diaphragm pulls are in and put so fast while I seize. Sometimes as quick as 4 breaths a second. They are shallow but there.
I think you need a neurologist that cares more. Has she changed anything? Over the years one can develop a tolerance to the drug and it needs to be adjusted or changed accordingly

[Steph]

Thanks Rae - I think she does need more help - thanks for explaining about the blue - no-one told me!

[Nakamova]

Hi Steph, welcome to CWE!

I agree with what Rae says. Since your daughter is a teenager now, her metabolism/hormones are probably going a bit haywire -- which can definitely affect both medication levels and seizure threshold.

I hope you get some answers from her neurologist. I recommend that you write down all your questions for him, it can help in getting the most out of the appointment.

Best,
Nakamova

[huskymom]

Try keeping a journal for her as well. The doc may see a corolation between the upped seizure activity and hormone levels. Being a teen is hard enough with out the increased seizure activity. I hope you find a happy result soon!

[Jbo57]

I agree with all those who have posted. I get frustrated with docs at times. They see so many people with problems that it's easy for them to forget that this is YOUR problem. If you feel like you are just a case number to this guy then find another. I'm on my second neurologist...but I love my G.P. Hang in there!