Advice needed - absence seizures

[peasontoast]

DD has been having absence seizures for the last year approx. She is 10, in year 6 and this seems to have coincided with a general withdrawal from the group of friends she has had all through primary although I don't know if this is related or not.

The seizures seem pretty mild and weren't really bothering her until she had one in the middle of her class assembly and was being prompted by the teacher for a good 20 secs before she tuned in again. The teacher hasn't mentioned anything about these seizures and seemed to think she was just daydreaming so had a bit of a moan at DD after the assembly which upset her. I am just a bit unsure whether to involve the GP in case they start talking about medication as the idea scares me and I know that DP will be dead against any drug therapy. Any advice/experience appreciated!

Has she got a dx of epilepsy?

DS3 (who already has a dx of autism) has just been referred for epilepsy tests but his absences are causing enough isues for him to ahve been pulled from his maninstream inclusion curriculum; I think if we were offered meds I would grab like a shot but you ahve to balance that for yourselves, preferably though with medical input

No dx - haven't got that far yet. Your DS seems to be much more affected - DD is managing school work etc

peason, he has autism also so that is his main issue: picking up what is an autistic absence and what is an apileptic one very complex indeed

However I do really think she should ahve the epilepsy dx at least confirmed by a neurologist, even if she chooses to refuse meds. For a start, how do you know it's not related to an underlying condition that can be treated now not later?

Yes sancti, in my heart I know I've got to go to the GP but I am really worried at the repercussions and especially if I end up having to fight DP over treatment - he is almost always opposed to conventional treatments. As a family we tend not to cope well with illnesses and when I mentioned to MIL a few weeks back about the absences she just brushed it off and said I shouldn't give DD excuses for not paying attention!

No relevant experience, but I agree with the other ladies - think you should see GP and push for a specialist referral to check out the symptoms you/she are noticing. Once you know what you are dealing with, then DD and you/DP can make an informed decision about the risks/benefits of medication.

I meant to add - Riven, that is awful and shocking, I really am very ignorant about epilepsy. When I first looked up info on absences I didn't even realise they were a form of epilepsy

The thing is, if they test for epilepsy you will be able to show MIL that it is not an absence of attention: it is far more

That will be useful

As for your DH- i've been inclined to the odd alternatiuve thing in my past as well, but ask him if he would willingly let a brain tumour (almost certianly not please don't panic) go missed for the sake of a correct diagnosis

Becuase in all honesty of the answer is yes then his opinion on this is best ignored

I've seen two of my children diagnosed with asd, one of those with an eating disorder, had a suicidal DH but epilepsy is by far the scariest thing we've encountered thus far. it's notr something to mess with.

You've really been through it Sancti.

please getit checked for long time I was told ds absences were daydreams ff and all of a suddern he has started having full blown seizures and turns out all those little daydreams were probably abscence

Oh i'm alright peason LOL- been over many years and long dealt with

(and I am only whining at all coz I am tired as hell and DH is being an arse and having things like friends and all LOL)

roundthebend - how old is your ds?

hey sancti - permission to whine granted and LOL backatcha!

Peasontoast don't be scared. My dd1 age 6 was diagnosed with childhood absence epilepsy recently. Dd1's absences gradually built up from barely noticing them to obvious absences which suddenly began to increase in regularity(4 recorded during 30min EEG). Dd1's character changed - she had become an angry girl, moody, talking-back etc. Her absences put her in danger as sometimes she walks off during them if she's standing - into rush-hour traffic once. Children are literally unconsious during their absences even though they appear to be awake.
Like you, I was scared of meds and their side-effects. But, seeing how dangerous absences can be I decided to go ahead. The choice of meds was up to me - I chose ethosuximide (brand name Zarontin) due to good reports in recent research. Quite honestly it was the best decision I ever made. 4 weeks on meds and dd1 is back to her happy smiley self and no absences nor side-effects - and that's on only just over half the recommended dose for her bodyweight. I control the dosage which has big benefits: it's up to me to regulate the amount according to the effect and in that respect I can keep to the minimum dosage necessary to improve dd1's quality of life while negating the risk of side-effects.
I feel comfortable now giving dd1 her meds - it's been a blessing for her and a huge relief for me.
Be brave xxxxxxxxxxx

Hi ds is 4.9 . Am annoyed that proffesionals did not listern to me in first place took ds having major seizures to point we was pretty close to heading into itu. before anyone connected the dots together

Please get it checked then you can least make a informed choice and there are lots of medications out there .for me there was no choice ds is medicated think was the worry that the next one could be even worse

Thank you kissingfrogs, that is much more reassuring - and it's interesting about the effect on her personality...I have tended to put DD's moodiness and withdrawal down to her age ie pre-teen stuff but it has been quite a marked change and I suspect that at least a part of it is linked to these absences. I have made up my mind to make an appointment with the GP today, hope that he will be sympathetic and prepare to go head to head with dp. x

That is very young isn't it? I'm going to have to learn a lot more about epilepsy as I thought it was mainly a teenage/adult problem. I suppose it's possible that DD has been having absences for longer than I noticed as she has always been a dreamy, quiet sort but, until the last 12-18months very good-natured as well. It's interesting that when I was looking up 'absence seizures' after the assembly prob i mentioned in my original post she came up behind me and instantly said 'that's what I get isn't it mum?'.

I developed epilepsy 10 years ago, a few months after ds3 was born. Looking back I think I probably had it throughout my childhood. Was just taken for being someone who goes off in a daydream once in a while and faints every couple of years.

I didn't want the diagnosis but having had a spate of 3 episodes in one month when I fell down. One was witnessed by ds1 who was 4 and called an ambulance because he was scared. It got taken out of my hands and despite having clear MRI and ECGs I have a diagnosis and have to take medication.

I was really anti the medication because it does exactly what it is meant to do, slows down the electrical activity in your brain. I am conscious of this because I am not always as quick to recall things, certain words just aren't on the tip of my tongue as fast as they used to be (though that could be age)but as one of my friends told me at the time. if you were diabetic you would take insulin to save your life. I am now epileptic and my medication is potentially saving my life (and my dc because as long as I am on the medication I get to keep my driving licence)

They might not put your dd on meds straightaway. Puberty however can affect epilepsy so I would definitely go and see someone as it sounds as if she is becoming more vulnerable to increased incidences of absences. Stress can be an attributing factor and as she has secondary transfer and adolescence to cope with, you don't want to make life any harder for her by having to deal with any episodes she has. Good luck.

I'm to on a steep learning curve about it my main worry was if seizures continued that ds would lose his hard won progress mind dr saying if ds continued to fit like he has been recently was his life I should be worried about

Steeled myself to ring the GP but turns out he is away for 2 weeks and the other nice GP is long-term sick so that leaves the other 2 who I have found to be pretty dismissive when I or dp/dd have seen them before.
That is my other worry tbh - that having finally been brave enough to go to GP they might say 'keep an eye on it' or something wishy-washy like that.

My DD got dx at 4.11 years but had absence seizures from 4.0 years. We only left it because we didn't recognise what it was at first. By 5 she started having tonic-clonic, but these did go with treatment by anti-epileptic drugs.

Glad you gone to see GP. It's a balance between side effects of AEDs and seizures themselves. Once you've got dx hopefully school will be more understanding and your DD may be entitled to some sort of support.

Remember that a lot of childhood epilepsies are just that - they will go by the time they are 16 and 2/3 are well-controlled by drugs so can get on with a relatively normal life.

SUDEP is extremely rare and most common in uncontrolled, night time tonic-clonic seizures.

Best of luck.

Sorry - just seen your last post. Could you get your DD's teacher to write a letter stating what he/she has noticed - IMO if school says something GP more likely to take notice.

Also - i think with epilepsy, GP is unlikely to dismiss. As soon as i went in with my DD and described what was going on (and it wasn't DD's GP) they referred straight away. Seeing a GP about sore throat etc is treated very differently.

I'm not sure if this is right but can't the school refer your dd to the child health dept with your permission? I'm pretty sure thats how ds2 got to see a specialist. Never seen our GP for his asd even with diagnosis it went straight through to consultant. you could ask school.