Epilepsy - could we really have found the answer in our fridge?!!!

[twoisplenty]

I'll explain! Ds has had epilepsy since he was 4 yo. He had some grand mal seizures, but mainly they were partial seizures whereby his face and sometimes hands would jerk for 10 seconds or so. Then his epilepsy changed to myoclonic seizures so the paed put him on sodium valproate, which hasn't done much but he hasn't had grand mals, so it may be doing something.

Anyway - I started giving him Eye Q fish oils, 15ml per day, and all of his jerks and jumps and myoclonic seizures just stopped. He's completely calm.

I took him off the fish oils and his myoclonic seizures were worse than ever, one day he had jerky seizures evey 5 minutes or so.

I put him back on the fish oils - all seizure activity stopped again.

WOW!!!

Coincidence? I shall have to stop the fish oils again to see the result (as recommended by the paed).

I'm just delighted! I would actually like to get him off sodium valproate as it has loads of additives including red food colouring which is banned in a few countries because it causes temper tantrums.

So it may help his temper if we can get him off sodium valproate.

Anyone else had such experience?

[Nat1H]

No, mine was the complete opposite. My DS2's seizures were worse when he was taking fish oil - actually this led to his diagnosis. we were told by our neurologist that fish oil makes epilepsy worse! I would check it out with a neurologist if you can - not sure if a general paediatrician is clued up enough about brain matters!!
Good luck

[twoisplenty]

I think my ds is being referred to a neurologist. To be honest, we have never quite believed that some of his jerks and jumps are due to epilepsy, although the grand mal and myoclonic ones are definitely epilepsy. So maybe the fish oils are calming part of his nervous system instead...I'm only guessing, but as long as all is calm, I'm happy and long may it continue!!!

[lottiejenkins]

My profoundly deaf 11 yr old son is being given Drama Therapy at school this year. It's to help him with his general behaviour and temper tantrums, also to make him aware of others feelings! Have any other children had drama therapy? and if so what did you think of it?

[lottiejenkins]

sorry post below went in wrong place many apologies!!!

[Tamum]

How interesting. I think epilepsy is such a catch-all title that it's entirely possible that there will be different solutions for different sub-types. Sounds like you have done the experiment properly, anyway- long may it continue!

[twoisplenty]

Well, even his grand mal seizures couldn't be "pigeon holed", because our ds stayed awake and was fully aware that he was seizing - the paed was amazed. And the paed has never been able to classify some of his other jumps and jerks. I think a trip to the neurologist is long overdue.

Wish fish oils could fix his temper tantrums as well! Might hunt around the fridge for another cure for that!!!

[Tamum]

A few limp lettuce leaves, it would have to be, if it was our fridge

[edam]

Glad you've found something that works for you. Agree I'd rather see a neurologist than a paed about epilepsy (well, a paed. neuro with an interest in epilepsy would be ideal...).

Epilepsy is a funny old collection of symptoms. I don't think there are two cases the same, tbh, speaking as someone with epilepsy. And it's still far from perfectly understood. So I wouldn't draw any conclusions broader than 'this works for you, fab'.

Btw, I agree sodium valproate is not ideal. But I'm not a neurologist, merely someone with epilepsy who is very grateful I happened to live near a specialist hospital service so was never dumped onto it.

[edam]

That does sound extraordinary, Two, really do pursue this neurologist appointment. Have never heard of someone being conscious during a major seizure, thought that was an essential part of the definition, really.

[r3dh3d]

lol, I remember with some satisfaction the rather eminent regional neurologist quizzing our paediatrician (interest in neuropathology and epilepsy) about DD1's seizures - he'd seen dozens of them, and still couldn't describe them to her satisfaction!

Fish oils didn't work for us either. And I guess - if they make the connections between the neurones operate better - that logically they might make E worse in a lot of cases. But well, well worth a try. Considering how many people have Epilepsy, sod all is known about it, it's scandalous.

[twoisplenty]

Thanks for replies! Edam, why do you dislike sodium valproate? A few days ago, someone did another thread about changes in behaviour in their child, and someone suggested sodium valproate made their own child's behaviour twice as bad. I'm so keen to get him off it.

[r3dh3d]

Oh, and DD1's "classic" seizure when poorly controlled is what we call complex-partial-motor which looks like a slightly lopsided TC (though her TCs are complex partials that generalise iyswim) but she appears conscious throughout. No-one would believe me till they saw one....

[twoisplenty]

Why oh why don't doctors believe what parents are telling them? (as with your dd's seizures r3d) It drives me crazy. fortunately my paed has been ok with us, but I wonder what the neurologist would say.

[Bewilderbeast]

DP who had epilepsy in his teens and again in his 20s still won't eat foods which are high in vitamin C (oranges, cabbage etc) because he was told to avoid them to reduce seizures.

[lottiejenkins]

It was me that posted about sodium valporate before and it definetly made my ds worse. He was having about 6 tantrums a day while he was on it, and it took about two/three weeks to get him back to "normal" after he stopped taking it. To be fair the paed did say it could go either way with his behaviour. I also noticed that it made him sleep longer in the mornings too!