Advice on epilepsy please (quite long)

[goldenbirdies]

Ds 11 years old, diagnosed with absence seizures last september. Had an EEG at the appt where they induced two absence seizures by getting him to take deep breaths. The consultant said that absence seizures were fairly common in his age group, he was unlikely to experience any other types of seizures and he might grow out of the absences after puberty. She prescribed Ethosuximide starting at 500mg and building up to 1000mg daily.

DS seemed to do quite well on 500mg and his absences were reduced to the occasional one. We tried the full 1000mg dose but it made him feel sick and dizzy. I must admit we were a bit too relaxed about making sure he always took the medication so would sometimes miss the night-time dose. Anyway, a few weeks back, after not taking the dose at night, he had a major tonic-clonic seizure in the morning. We went back to the consultant who changed the medication to Sodium Valproate and said DS probably had Juvenile Epilepsy. She said the new drug should control both the absence and tonic-clonic seizures but since going over to it DS has been getting frequent absences every day.

Has anyone had a similar experience and can give some advice about drug treatments? Also, should we be pushing for further EEG and other investigations to see if there is some reason his epilepsy has worsened?

Well, the no 1 cause of seizures in people (kids and adults) on E medication is non-compliance. And the night-time dose is the important one. Also any kid with a pre-disposition to E is likely to "spike" around times of major brain growth/change - age 5 and puberty being the big ones. So I'd take comfort in all that because it's consistent with his E being entirely stable, and you've got a good chance (no guarantees of course, but...) of it being one of the ones they grow out of.

Re: the absences and the Sodium Valproate. Well, unfortunately E is incredibly common but still very poorly understood. The brain is an incredibly complicated thing, after all, and that's chemically as well as electrically and most of the E meds work in several different ways and not all kids will respond to all of them equally. And though in theory a med may work on seizure types a, b, and c, in practice an individual child's brain chemistry may mean they actually need an entirely different med which is supposed to work on something else! And lastly, all the meds take a while to get up to working concentration, and that concentration can be different for everyone ... DD1 is on 50% over the max clinical dose of pretty much everything, because she metabolises so quickly.

The net result is that E medication is an art, not a science, and is trial-and-error. The rules are more like guidelines, and often they just try stuff till it works. Meanwhile, as a parent, you go through hell. Wish it was otherwise. Be comforted, though, that it's "just" absences. All the studies I've seen say they don't do any harm - unless you start missing significant chunks of lessons, in which case obv there's an educational issue!

Concrete advice:

• NSE (national society for epilepsy) has a very active forum, with a parents' section. Because a lot of the parents on here have kids with other disabilities, we tend not to see so much "mainstream" E (DD1 peaked at 108 TCs a day, and having ruled out cutting the right half of her brain out, they are now thinking of implanting an electromagnet in her neck to control it because every new med she tries wears off eventually and we are running out. We are not in Kansas anymore.) but there are plenty of parents on there who have been in the same boat.
• Make sure your "consultant" is the right sort of consultant: a paediatrician is no earthly use, you need a decent neurologist.
• keep a good seizure diary. Seizure frequency uploaded to Excel and graphed in pretty colours will convince any consultant.
• you only need more EEGs if the EEG isn't capturing what's going on. If you're getting problems on waking/in sleep, then you need to push for a "sleep EEG". They don't like doing them because they take longer but basically you deprive the child of sleep and wire 'em up for a few hours. They are much more likely to catch the bad stuff than a standard EEG which is a very hit-and-miss affair.

hth

rd3h3d* why is the night time dose the important one?

Agree with zzzz that all doses are important. If you read the stuff that comes with the meds it outlines that doses should not be missed. We give ds his dosed at roughly 12 hour intervals so that he is always kept "topped up".

Agree they are all important! But as zzzz says, for many the peak time for seizures is nighttime; it's something to do with the way that the brain waves change pattern as you go in and out of the various sleep cycles I think; the change can trigger a seizure if med levels are low. Plus I think it's the hardest one to give consistently especially as they get older and have more going on in the evenings. So I think it's the hardest one to keep on top of.

Thanks. I did ask an epilepsy nurse if absences continued during sleep but she said she didn't know. Seems logical that they do happen.

I'm in the process of weaning dd1 off Zarontin after 1 year seizure free as I've noticed a difference in the way she feels (no more pre-ictal symptoms such as headache). Weaning very gradually (0.2ml per month) and watching her very closely. I know you're supposed to wait for 2 years of no seizures but even my neurologist didn't have an explaination as to why it had to be 2 years, so I'll do what I think best - unless someone knows different?

Medication for epilepsy isn't an exact Science and 2 children may not react the same way to treatment. Some medications only prevent one type of seizure so a treatment may prevent tonic-clonic seizures but not absences.
However if you are unsure you really need to speak to your epilepsy nurse who will pass information on to the consultant if needed.
Sometimes it can take a while to find a medication (and dosage) that suits your child. But the most important thing is to make sure that your child has the correct dose of medication at the correct time and that this becomes part of your routine.

Thanks for the answers folks. Just wanted to clarify that since ds first t-c seizure we have not missed a single dose - I think we were less stringent about it when we thought it was just absences especially as ds said the medication made him feel a bit sick.

Has anyone got any experience of Acetazolamide (Diamox)? I've been doing a bit of reading about difference epilepsy drugs and this one seems to work well for both absences and tonic clonic seizures but that's as far as I've got with it. Also, does everyone have an epilepsy nurse? Apart from his consultant we have no point of contact with any other epilepsy specialist.

Epilepsy nurses are generally funded by charity/business - at least to start with - so some places get them and some don't. They're not universal throughout the NHS.

We don't have that much contact with ours because the intial desperate search for a med that would work was mostly inpatient in hospital. And after that, we either manage by ourselves or end up back in hospital again. We don't seem to spend much time in the middle ground!

Acetazolamide is not one I've heard of tbh. And we've tried most of the good ones.

Oh - re: the "feeling sick" - quite a few of the E meds have transient side-effects, ie make you feel tired or ill or hungry or not hungry or whatever, but only for a few weeks in most cases. Obviously he can't put up with it if it's severe, but if it's mild it's always worth persevering for a bit because more often than not it goes away.

ive never heard of that drug either and we have tried loads over the 36 years my sons been on them

myra

zzzz this is my reason for wanting to try weaning off as soon as possible: the being held back when medicated. In my dd1s (nearly 7) case it's school work, she seems to lack concentration and is now behind so has an IEP as she has made very little progress over the last year. I think its the meds not the epilepsy as I made careful note of the changes in her prior to meds. For example, I know the headaches, tiredness and crossness were due to epilepsy as these started pre-med.
Zarontin has an amazing effect on stopping the absences. The only side-effect was a patch of hairloss which eventually started to regrow after 8/9 months, and the concentration. I am so hoping her absences have stopped.

Does anybody know why absences would stop and then reoccur? Is it due to major changes in a child's development and growth, and if so are there certain stages where the risk is higher?
(i know all children develop at their own pace so I guess I'm asking from a neurological point of view here if anyone can answer this question).

it was noticable that even during the weaning process that each drop in dose let her out a bit more.

I can empathise with that.

I think the 2-year thing is just on the same basis as you have to be seizure-free for 2 years to get a driving licence: that's the point at which it's statistically quite likely you won't have another one. Plenty of people go six months or even a year between seizures as part of their regular pattern. I don't think it's a magic number particularly.

The benefits/side effects thing is a completely different ball game for less severe Epilepsy than it is for kids having constant seizures. In severe E, the cognitive down-side of the Epilepsy is significant, to the point where you're pretty much always better off on the meds, no matter what they do to your alertness. With milder E it's a finer balancing act. I'd be weaning at this point too - it's a bugger, isn't it? (pardon my French). We had to wean DD1 off Clobozam at one point and it took a year.