Anxious mum

[Bathtub]

Well, Hallo friends, this is me. I'm here because my lovely daughter had a seizure about a fortnight ago, and like any mum I have been climbing the curtains with worry, trying to find more about it and what's likely to happen next.

After her seizure, which according to a witness seems to have been a full-blown grandmal type, she was kept in hospital overnight, but she has been okay since. The bloods and CT scan came back normal, the EEG showed something unusual - ??spike-waves?? -, and now she has to wait three weeks for an MRI and then back to see the specialist to have it all explained.

There's no epilepsy in the family that I know of, but her gran had long term depressions followed by Parkinson's which I'm told is due to a deterioration in brain chemistry, and I've had hormonal issues: PMT and severe (but luckily short-lived) post-natal illness, that suggest a susceptibility of my brain to chemical imbalance of some sort although not causing seizures. I'm also one of those people who can get light-headed on a single drink, so I don't. Whereas my sister could drink anyone under the table, as she never got hangovers, and consequently wrecked her liver

So, the triggers for this attack seem to have been partying and tiredness, and possibly low blood sugar caused by getting up too late to get breakfast before work (but of course she made time to do her make-up :sigh: ); well hello, she's 20, what else would she be doing?! I don't think it's drug related.... But then, I'm hardly going to be told if it is... onder:

Thinking back, she has she three or four really bad headahces through the teenage years, some with visual disturbances despite having up to date specs prescriptions, but bad not enough or often enough to get investigated. Now I'm wondering if these might have been migraines or something? It's like we have little pieces that may be from the same jigsaw, or they maybe be totally unrelated.

One thing to add is that, like many children, she has had a febrile convulsion, this was long long ago and only once, as we were told this was common in pre-schoolers but that we should never let an illness push her temperature up so she was always treated promptly with paracetamol. On account of this though, we can't honestly say it's a first seizure, and the guy who did the EEG said it showed some underlying tendency despite the long interval.

So I'm wondering several issues. Are they likely to want her to take medication based on one (unprovoked) seizure and an abnormal EEG? Will they take into account, that at some point in the next ten-fifteen years she might like to start a family, cos I'm worried by what I've heard that some of these drug can do to unborn babies. Or is it more likely to wait and see?

Also, is it bad that I would be happier as a parent to think (based on the abnormal EEG and my and her gran's background) that she may have a lifetime susceptibility, than that it could have been something once-off and possibly (but not likely) drug related? The guilt-trip thing? I'm really confused by it all and hoping someone can shed some light. Thanks

 

[Nakamova]

Hi Bathtub, welcome to CWE!

Sorry to hear about your daughter. It is possible that she's had a one-off -- and truly, that would be ideal -- but it's also possible that she has a lowered seizure threshold, and that she's a tad more vulnerable to abnormal brain activity than the average person. The febrile seizure may or may not be relevant. For the vast majority of kids who have them, there are no additional recurrences of seizure activity. My little brother had a fever seizure when he was a tot, and he's healthy as a horse now; I'm the one who ended up with epilepsy at age 35. In my case, after one seizure (actually 2 seizures within a few hours of each other, so considered as one), I had an EEG that showed "spike and wave" activity that is considered characteristic of epilepsy. If your daughter's EEG is similar to mine, the neurologist may recommend that she go on anti-seizure medication as a precaution. But it is your daughter's call to make. The meds are strong and come with all sorts of side effects. She may want to "wait and see". If that's the case, she should definitely try to moderate her lifestyle as much as possible (not always easy for a 20 year old, I know). She should avoid extremes, eat and drink moderately (esp. caffeine and alcohol) and get plenty of sleep.

 

[RobinN]

If I were to do it all over again, I would learn all I could about seizures, meds, and alternative therapies, before I ever agreed to try medication. I wish I had all the information prior to agreeing to set her on a spiral downward, and trying four meds.

 

[Bathtub]

Thankyou both. I went away and searched for epilepsy + psychosis and it seems there is a strongly increased risk linking both ways from parent to child so my history may well be related both suggest a lowered threshold. I never had an EEG. She was also accidentally whacked on the head with a hockey stick at 11, but we thought no more of it. Hmmm.

I'm going to try and learn more about alternative therapies and lifestyle. Interestingly we already made a similar call a few years back in respect of Tamoxifen after breast cancer, so as a family we are getting used to living with calculated risks; it helps to have some idea what the risk levels and possible consequences are. Thanks for the support

 

[Bathtub]

So, the end of school term party season is well under way. We have now established that party + booze + not.enough.sleep +/- very.hot.weather => seizure. Whether the fast spikewave bit on the EEG or the unusual formation somewhere deep in the brain are relevant, we don't really know, (beyond a strong suggestion that it's not psychogenic) but lifestyle certainly is relevant and controllable. As a parent I'm now moving from my initial sympathy and concern, to annoyance. How often does she need to test this damn thing to prove cause and effect before she can see what's sensible?
She's reluctant -I am with her on this- to start the medication, although the doc did give her Keppra (uh, I thought that was mostly used for partials, not grandmals?) but due to side effects and getting hooked, didn't recommend taking them, which has us totally puzzled. Hoping to get to see a different doc soon.

 

[Nakamova]

Keppra is routinely prescribed for tonic-clonics (grand mals) in addition to partials. But I think the neuro is being conservative in recommending it because your daughter has only had the one seizure -- in other words, why deal with meds and the side effects if you don't absolutely have to? Prevention is cheaper and healthier -- if your daughter can make the lifestyle changes that will help with her overall health, that's great.

 

[Bathtub]

Yes, she had a second seizure in very similar circumstances two weeks back, mid-morning after the party before, hence my annoyance. Sorry if I didn't write that very clear. Ambulance crew checked her over and sent her home, she was in public but not with friends so we don't have a very good report on this one, and she hasn't been back to the doc yet. It seems as if we have got the pattern, now how long does it take, how many more episodes till she wises up and takes some responsibility? I'm sitting on my hands trying soooooo hard not to nag. but.

 

[Nakamova]

Got it -- sorry I missed about seizure #2.
You might mention to your daughter that each new seizure makes it that much more likely that she'll have a subsequent one. Best to nip things in the bud if at all possible, either by lifestyle modification, meds, or both.

 

[Chaz1]

My Son could not utter the word Epilepsy in 1st year of diagnose, it was a real struggle….was mighty angry every time I tried to talk to him about it......but I never gave up…even though he was in absolute denial…

Too many T/C later he is not in denial any more, now 26 (was 23 when diagnosed); he has fully accepted E, both wants and is doing everything possible to control the seizures, thank God...that includes meds, supplements, excellent diet/organic nourishment, bio-feedback (brain training),plus learning to manage stress and distress and let things go (therapy),sleep/rest (real rest)...

You mention her 2nd seizure she was not with friends, consider medical ID, there are some really cool ones out there (bracelet)...

Education, get some books and info and leave it around the house, she may recognize herself in others experiences/ literature….seizures are dangerous and she needs to know it…..if she has not seen a T/C, YouTube can show her what one looks like….tough yes but she needs to be aware and taking care…….and keeping herself out of dangers path..

Keep talking to her and listening and noting everything out of the norm in a seizure dairy, start one today…I keep one for my son (he does to) and I sort of interview him after he has one to look for the potential triggers…too much on, tired (party too much) , stressed, unhappy, insecure, emotional distress, what did he eat, drink, you name it I note everything, its helped us when facing the various docs and deciding what to eliminate from diet…and helps to recall in a heartbeat what happened a few months back…highly recommended….

http://talkaboutit.org/

 

[JaneC]

Hi Bathtub,

I'm in a similar position. My daughter is 16 and has recently begun re-experiencing seizures and a long time with none. All the recent ones have been connected to nights when she has stayed up very late at parties or whatever and has done some experimenting with alcohol.
I know it is frustrating and hard to understand why they would want to put themselves through it again and possibly again. It's a huge worry but I do think it's worth trying to put yourself in their shoes at times. I don't suppose it's fun to be their age and have to be the one who says I can't stay up, I have to go to bed or I can't drink because...
I think my daughter is generally quite sensible but I don't think she is being very sensible about this at times. However, she is very young, as your daughter is too and it must be hard for them to suddenly have this thing happen and to come to terms with what it means.
I agree with Chaz - the more both of you know about it, the better. The drugs is a tough one, of course. My daughter had two tonic-clonic seizures six months apart when she was 11/12 and we agreed with her doctor we'd take a wait-and-see approach. Then nothing happened for a few years so she was never on medication.
I think we're going to have a big decision to make this time - if her neurology appointment ever comes through...
I hope your daughter is well at the moment x

 

[Bathtub]

Thanks Jane. actually I know this sounds cruel but I wish she wasn't so well, if she actually felt slightly rotten every day then she might believe the docs, and do what they say she should to be responsible; as it is, she feels so well that she thinks it's okay to go partying again. She's scheduling one early night this week. And six nights out and/or on friends' floors, and/or travelling. The unpredictability, the seizures coming out of the blue when you felt so well, seems to be one of the hard things about this illness. There's no obvious quick reward for taking meds faithfully or going to bed early, and she doesn't seize after every late night. She is still trying to tell me that alcohol might not be relevant, as she doesn't think she drinks much anyhow :sigh: "Everyone I know blahblah...."... yes, but they don't all have a susceptible brain with such excitable well-connected neurons.
Chaz, Thanks for the encouragement.