ibcdbwc Posted May 17, 2011 Report Share Posted May 17, 2011 Hi Everyone, I look forward to the day when I can start helping others. Sadly, I'm still very new to this! I recently posted that my ds10 had worsened while still on antbx (he was away with his dad on a father/son trip). This was day 7 omnicef, when sxms began to return after exacerbation a week prior (keep in mind his cultx and titres were WNL-- his brother had positive strep with fever... ). I found out today that his dad had not given him fish oil for the entire 3 day weekend. Our son has been on fish oil for several months (even before compulsions started). Oddly enough--- I had recently switched brands (he's on nordic naturals) and had missed a few doses myself a few months ago. I thought that overall the fish oil helped calm him (I thought). But since switching the brand I noticed that he had a BLISSFUL day-- the day after a missed dose. PANDAS has forced me to start tracking everything- I had not yet-- determined a real pattern. Sooo my question: in your experience does fish oil-- help (reduce inflammation) or hurt ( i.e. cause increase sxms-- read on Tourette board that it did cause increase in tics)? Could the fish oil lapse this past weekend cause the compulsions to come back-- despite still being on antbx. Lastly, if you like fish oil- which brands do you prefer? Link to comment Share on other sites More sharing options...
peglem Posted May 17, 2011 Report Share Posted May 17, 2011 Fish oil gives my daughter awful gas and that discomfort makes things worse. She does very well on cod liver oil, though. Link to comment Share on other sites More sharing options...
TexasDad Posted May 17, 2011 Report Share Posted May 17, 2011 We were using Ibuprofen for a while there to control inflammation post-IVIg to help keep things in control and promote healing while the IVIg worked its course. A couple of months ago we switched to fish oil, having read about its anti-inflammatory properties. He takes 6 x 1000 mg capsules per day. All I can report is that he maintained his level to baseline after the switch and continues to improve to this day, even with exposure to Strep and contracting two viral illnesses. It has performed equal to or better than Ibuprofen. We just use the Kirkland brand, although I'm sure the pharmaceutical grade is much better. He tolerates it well and it works for us. Reducing inflammation may also promote a healthy BBB, which I think is important in achieving and maintaining some form of a "cure." Link to comment Share on other sites More sharing options...
mama2alex Posted May 17, 2011 Report Share Posted May 17, 2011 Fish oil causes my son to chew on his clothes incessantly. We don't give it to him. I don't know if its inflammation, per se, an allergy - just not sure what the mechanism is. Link to comment Share on other sites More sharing options...
nicklemama Posted May 17, 2011 Report Share Posted May 17, 2011 My DS takes Coromega fish oil in squeezers that are flavored lemon lime. He's been taking it for at least a year now. Its part of Dr K's post IVIG protocol. I don't notice any difference, one way or the other. Link to comment Share on other sites More sharing options...
lynn Posted May 17, 2011 Report Share Posted May 17, 2011 I'm in the minority, but fish oil, any kind of fish oil including salmon oil, krill oil, cod liver oil causes increased tics and decreased attention. It doesn't improve if I keep dosing, it just gets worse. I don't know why. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 17, 2011 Report Share Posted May 17, 2011 (edited) I'm curious about this also and look forward to all the responses. There's been a lot of previous discussion on the forum on this topic, too, but some things remain unclear to me. We use Norwegian Gold, Super Critical Omega which is coated to prevent "fish burps" and has the 7:1 EPA:DHA ratio that was recommended here many moons ago as being an optimum ratio for anti-inflammatory properties and brain function. I haven't been able to find any research to support that contention, I'll admit, and I know I've seen a contrary opinion, also: that a higher DHA as opposed to EPA is desirable. I'd love to hear more about that. The 7:1 ratio is rather hard to find (this is the only brand and formula that I could find locally). Ultimately, I've used this particular supplement consistently, and DS seems to tolerate it well; he gets one capsule in the morning and another with dinner, and they're 1,000 mg. each. The only thing that I've read that seems to be consistently upheld and mirrors our experience is that you want a formula that contains Omegas 3 and 9 but no 6; I guess Omega 6 is featured in other fatty acid supplements (like flax seed oil) and is pro-, as opposed to anti-, inflammatory. Since flax seed oil tends to be more affordable, I had tried that for a few weeks early into DS's PANDAS treatment. He seemed to decline pretty dramatically during that period, so I switched back to the fish oil. One important note, though, is that my DS does not have tics . . . never really has, except during very extreme exacerbation. I, too, have read that fish oil can make tics worse in some kids. Edited May 17, 2011 by MomWithOCDSon Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 17, 2011 Report Share Posted May 17, 2011 I decided I could try to satisfy my own curiosity this time instead of sitting idly, waiting for one of you to point me in the right direction! Found a couple of interesting studies regarding EPA: EPA and Schizophrenia Chinese Study - EPA and Suicide Here's one on inhibitory effects of EPA; it's too scientifically dense for me, but as I understand it, EPA and other unsaturated fatty acids can impact a human's ability to synthesize other drugs. Maybe this would have something to do with why some kids tic more with it? Maybe somebody with more savvy can interpret. Inhibitory Impact of Fatty Acids Meanwhile, with respect to a DHA-rich supplementation, this study seems to suggest that DHA-rich supplementation was more beneficial than EPA-rich in terms of lowering inflammation. DHA Study And this one suggests that ADHD symptoms may be managed via DHA use. ADHD and DHA Okay, now I'm more confused than I was when I started! Maybe at our next need to restock, I should switch up the EPA:DHA ratio and see what happens? Link to comment Share on other sites More sharing options...
SSS Posted May 17, 2011 Report Share Posted May 17, 2011 I started Nordic Naturals Pro-EPA xtra soft gels with my dd6 right after our last IVIG- and I do think it is helping. It is a 4:1 EPA to DHA ratio, no omega 6 or 9. It's really hard for me to pinpoint exactly what is doing what, since we are post IVIG, but I read Dr. K thought it was important (he is not our treating Dr.) so I added it. I am keeping with it. Thanks for posting those links! Link to comment Share on other sites More sharing options...
thereishope Posted May 17, 2011 Report Share Posted May 17, 2011 (edited) My son takes Carlson Kids fish oil. Edited May 17, 2011 by Vickie Link to comment Share on other sites More sharing options...
matis_mom Posted May 17, 2011 Report Share Posted May 17, 2011 (edited) Hi Everyone, I look forward to the day when I can start helping others. Sadly, I'm still very new to this! I recently posted that my ds10 had worsened while still on antbx (he was away with his dad on a father/son trip). This was day 7 omnicef, when sxms began to return after exacerbation a week prior (keep in mind his cultx and titres were WNL-- his brother had positive strep with fever... ). I found out today that his dad had not given him fish oil for the entire 3 day weekend. Our son has been on fish oil for several months (even before compulsions started). Oddly enough--- I had recently switched brands (he's on nordic naturals) and had missed a few doses myself a few months ago. I thought that overall the fish oil helped calm him (I thought). But since switching the brand I noticed that he had a BLISSFUL day-- the day after a missed dose. PANDAS has forced me to start tracking everything- I had not yet-- determined a real pattern. Sooo my question: in your experience does fish oil-- help (reduce inflammation) or hurt ( i.e. cause increase sxms-- read on Tourette board that it did cause increase in tics)? Could the fish oil lapse this past weekend cause the compulsions to come back-- despite still being on antbx. Lastly, if you like fish oil- which brands do you prefer? I had been giving it to my son, but then when we did food sensitive testing, he came back allergic to all fish, so now I use the plant-based supplement instead. If you use fish oil, make sure is certified free of heavy metals. Edited May 17, 2011 by mati's mom Link to comment Share on other sites More sharing options...
SarahJane Posted May 18, 2011 Report Share Posted May 18, 2011 My ds 7 takes fish oil. We're 6 months post IVIg. I have had times when he is in a flare that if I halt it for a while, it seems to help. Then I add it back in when I think I can. Don't know why that is tho'. We use Minami Nutrition brand MorEPA. They're junior capsules & strawberry flavored. They're mostly Omega 3 (high EPA per the name) with a bit of 6 & 9. I do 1 capsule vs the dosage of 2. Full dose seems to have an adverse effect...not sure why. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 18, 2011 Report Share Posted May 18, 2011 Fish oil has always made my child rage more... Link to comment Share on other sites More sharing options...
sf_mom Posted May 19, 2011 Report Share Posted May 19, 2011 Our LLMD just recommended the following type of fish oil... I haven't had time to research either but he did emphasize the DHA to me. http://www.spectrumorganics.com/?id=283 -Wendy Link to comment Share on other sites More sharing options...
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