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Reaction to vayarin? Or something else?


Hmrz
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My ds 9 started taking vayarin 16 days ago. In one week we saw amazing results that made us think that we had really turned a corner for the better. On day 15 out of the blue we saw an episode of extreme silliness that was like he was extremely drunk, a completely vacant look on his face. The episode lasted 10 minutes and after he didn't remember it. He only describes that time as being frozen in black and white. The next day he had a rage meltdown at school that was as far as we can tell unprovoked. He only says nothing happened and he tried to stop and he couldn't.

This has been a long road already and we have tried many different meds and therapies. . Ds had HD ivig 7 months ago. We saw good results and are planning another in October. He is no longer on psych meds.( we weaned those a few months back with positive results) his meds are now abx daily ( 500 Zithromax) 2vayarin capsules, probiotic. He has made amazing progress any experiences would be so appreciated. Thank you

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I don't know enough about vayarin to make a guess in your case and can only tell you what our experience was.

we were on vayarin for 6 months. saw some results but nothing as dramatic and quick as you indicate. effect leveled of by the end of the summer and we stopped vayarin. we went to regular fish oil and did not see much change.

Edited by pr40
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hmrz: It sounds like your son has had quite the journey and is doing very well!

 

I also don't want to hazard a guess about what could be affecting your child, so I'll just tell you our experience and maybe something will be useful to you...

 

Like many here we were on fish oil but still having some difficulties so our pediatric neurologist recommended Vayarin. That was good, but things still weren't perfect, so the neurologist recommended that we use fish oil and Vayarin, which seems to be the ticket for us. He has much better focus and decision making with the both. The vitamin D3 also seems to be a big part of his recovery as well. We also take Vitamin C, curcumin and probiotics.

 

But even with all of that we still haven't completely eliminated all flares....they are milder though and seem to be longer and longer between, but I think that's just the general healing process working and not any one pill. I don't think Vayarin does much of anything to prevent flares, it just improves the baseline of behavior.

 

Good luck to all!

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We were on vayarin for a while. It coincided w a period of extreme hyper and aggressive for my son, so I stopped it and some other things he was taking. Since then, he had improved ( but he's not all better by any means) so I haven't wanted to fish things by adding it back in.

 

I don't know much abr omega 3 vs omega 6. But I did experiment once w a speech supplement that contains omega 3 and it coincided w a terrible pandas period for us. A more seasoned pandas mom told me omega 3 made her kid agitated and does in other pandas kids, so I stopped and things improved a bit.

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