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my son has been diagnosed with absence epilepsy, can anyone help me out here?

(8 Posts)
cheeryface Mon 12-Oct-09 23:01:02

hes 10 and i have been noticing him go blank for a few seconds at a time for about 12 months now. he doesnt know hes doing it.

but, something i have noticed which doesnt seem to add up is that from time to time and definately after hes been ill he has a few days where hes constantly blinking slowly (only way i can describe really) he kind of looks really really tired even though he isnt. i think it must be connected to the epilepsy because i also notice the absences happen alot more aswell. it just doesnt look right.

he isnt on any medication as yet.

does anyone have any idea whats going on? and also whether its best to put him on medication or not??

Northernlurker Mon 12-Oct-09 23:12:13

I know a child with this and they have tried the medication - all the types thought to be effective and nothing has stopped the absences. There were substantial side effects from the meds which have made it worthwhile stopping them for now and the medics are regrouping their ideas. This is very unusual though, most children with this have the absences stopped by medication so yes I think it's worth a go - BUT I think you need to consider that it may not work. My understanding is that the cureent dosage for children is a matter of experience and for want of a better word - guess work - these drugs are not tested on children in the same way they are for adults. That's not so problematic for your son as he is already 10. The child I know is much younger and I do think this is part of the difficulty in getting the correct dose.
You need to be speaking to a paediatrician and preferably a paeds neurologist. Have you been referred?

GentleOtter Mon 12-Oct-09 23:19:02

Can your GP explain about the absence spells?

My son had these when he was younger and would stare or be dreamy for a bit then come back to normal after a while. Sometimes it made him vomit, usually late at night or unduly sleepy.

We were told that it was something that he would grow out of when he was 18 or so and he did. The spells got fewer and he is fine now.

We were able to get longer times to sit exams in case he took an attack and felt disorientated. Stress or worry made things worse.

This never stopped my son from climbing trees, riding bikes etc. He was never offered medication for it.

This is not very helpful but I just want to allay your fears as it can be worrying at first.

Please speak to your doctor and ask for more information.

cheeryface Mon 12-Oct-09 23:23:16

yes we were referred to a neurologist about these blank episodes i was noticing and after an eeg test it was decided to be most likely childhood absence seizures.
i dont know what to make of the way his eyes look all dopey , he was ill last week and now although he says hes fine he doesnt look it. when i picked him up from school today he was doing the slow blinking thing and looked awful but was happy!
i have seen him like this a few times now. i didnt really make much of it when we went to the doc because i was most worried about these blank episodes .
im really worried about him hurting himself if it happens when hes runnig or on the stairs or something aswell.

cheeryface Mon 12-Oct-09 23:24:47

we have been ofered medication, the doc seemed concerned about him crossing roads and things as he will be going on his own to high school next year.

kreecherlivesupstairs Wed 14-Oct-09 08:17:14

My dd was diagnosed with this when she was around 2 years old, she did have an eeg but it was inconclusive because she didn't have an episode while the thingy's were on her head. The paediatrician we saw initially offered medication and she did try it, but we didn't see any decrease in her absences and the monthly blood tests were so distressing he stopped it. He did say she would probably grow out of it, and by the age of five or so she had. I think you need to go back to your consultant and ask his opinion about the medication and blinking thing.

Pheebe Wed 14-Oct-09 14:43:52

Cheeryface, I'd suggest filming him doing it and take it to his neurologist. Its worrying you its worth mentioning.

cheeryface Wed 14-Oct-09 20:55:26

thanks good idea

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