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Hi,

I am sure you have discussed this before and I have seen a few old posts but I am curious. For us fish oil or DHA in any form makes my son have ticks, pandas symptoms. I know for some children it makes them better. Let me know if it helps or hurts your child. Doctors seem to be pushing this which concerns me if its really not good for them. We all take olive leaf extract, except my PANDAS son because it hurts the antibiotics action, but to me if fish oil is not good why are they pushing it? Now if it helped your child that's awesome. I just don't get it. They do hide it in the superhero gummy vitamins and once we pulled those too it seemed to be the last key to helping him get better. Then the Azith was just fantastic. Again crossing fingers hoping it sticks for awhile. Just curious

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All I can say is you're the Mommy. If you don't want to give him fish oil, then don't. Every child reacts different to anything. Chemar, I think said her son's tics worsen with fish oil yet when he eats fish, it doesn't. I think she gives him flax seed?

Edited by Vickie
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My DS7 was on fish oil (Coromega) years before his first PANDAS exacerbation. Dr K recommends fish oil w/ 500mg of EPA per day post IVIG. I switched DS to Nordic Naturals post IVIG in order to get the required amount of EPA in the minimum amount of capsules per day. The two things that brought an end to his tics were biaxin and IVIG. He lost the tics two months after starting treatment w/ biaxin. They came back on zith. They got worse right after IVIG and then they stopped about 3 or so weeks ago. He is 11 wks post IVIG.

 

Not to discount your experience w/ fish oil in gummies but fish oil gummies have a very minimal amount of fish oil in them.

 

In my DS's case, I not seen any connection to fish oil and tics.

 

Thought I should edit to add that tics are not my DS's primary presentation. OCD and anxiety are.

Edited by nicklemama
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I do think the high quality fish oils, such as Nordic Naturals, are good for these kids in general, but for a few its a problem. When we gave our son Nordic Naturals years ago, he started incessantly chewing his shirt sleeves and collar. They would get soaked and people would make comments, so it wasn't just a little thing. When we took him off, he stopped. At the time, we thought it was some weird kind of sensitivity or allergic reaction (this was pre-PANDAS before we knew just how weird things could get!). We did have a Bioset practitioner desensitize him for this, and it worked until he had another bout of pneumonia, which must have resensitized him.

 

You mentioned that olive leaf extract "hurts the antibiotics action." Can you explain? We are now treating my son for Lyme/Bartonella, after PANDAS treatments were unsuccessful, and he was on several antibiotics at the same time as OLE for a while, so I'm curious.

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My DS has only displayed tics at the height of an exacerbation; they are one of the first symptoms to disappear when the abx kick in. He has consistently taken fish oil (Norwegian Gold - Ultra Critical Omega) for the last 2 years with no ill effects. However, I have heard a number of other families with children for whom tics are a primary and lasting symptom say that fish oil is problematic for them.

 

Flax seed oil may be a viable alternative, though I know some formulations also contain Omega 6's, which are reportedly pro- as opposed to anti-inflammatory; I guess you just have to read the fine print.

Edited by MomWithOCDSon
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One daughter, who was more tic prone when she was in exacerbation, seemed to have more Ps symptoms w/ fish oil--so she takes Flaxseed, w/ 1000mg of Omega 3 in it.

 

Our younger d, is taking Nordic Naturals EPA with 1000mg of Omega 3 and it seems to be a great help to her--I believe it was Murphy in FLA who recommended a higher EPA concentration for Ps kids, but I may be wrong. It seems to be very helpful for our younger d -- she is now 11 weeks post IVIG, better every week!

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Olive Leaf extract is supposed to be a natural antibiotic, which I am starting to really believe since I feel so much better on it. They say it can counteract real antibiotics so we don't take any chances. My son on the Azith doesn't take it because I want to make sure he gets the full antibiotics effects. Still, if anyone is doing something different and it's working, or if you've been told anything different that great too. Just going on what we've read been told. It's wonderful and has helped my whole family.

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My daughter is one that has had outbreaks of noticeable tics followed by long periods where you can't even tell she has any. Fish oil and just about any type of food with Omegas added causes her tics to be very visible. We used nordic natural when we were trying it. My daughter also reacted to fresh salmon bought from whole foods.

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Fish oil-- my pandas dd has been taking 1000mg in the morning and 1000mg at night and does great on it. She was 'classic' sudden onset pandas (onset about 4 years ago)- 'exorcist' variety which went untreated for about 14 months- IVIG saved her and we will keep giving her the fish oil forever probably?

 

By the way hello to everyone here! WE are doing great- she is doing awesome. NO ISSUES at all!

 

Wishing everyone great successes kicking this!

 

regards,

amy s

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My son has a bad reaction to fish oils. Since he has been sick with pandas - he has also developed an allergy to shrimp.

 

MaxParkersMom I am curious who is your son's neurologist? You can private message me. (Top right corner by your name in case you are unsure or just click on my screen name PhillyPA and send me a message)

 

I think it is great that your son is doing so well. I also think it is great that you got a neurologist to give you full strength azithromax for such a long time. What part of the country do you live?

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amy...again! love hearing "we are doing great!".....and i have to ask...is your daughter on antibiotics still (after the ivig) or were you able to stop?

 

 

Yes, still on antibiotics daily. Something mightly big would have to happen for us to want to risk taking her off them.

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It's the Omega 3 in fish oil that is helpful, because it's an anti-inflammatory, and it can be found in other places. Dr. Murphy cautioned us to look into what's in what ever supplements we give because some also contain Omega 6 - which can increase symptoms. I would check what supplements you've given to see if they have O-6, that may be the culprit. Also, it's good to note that since supplements and vitamins aren't regulated in the US, a alot of fish oils could contain other toxins and such that might be reacting with our kids.

 

Our little guy has fought us most of the way on any O-3 supplements except for one - it's a chewable candy - like a starburst made by Genesis Today. It has 100mg of O-3 per "chewie", no O-6 and it's source is 50/50 fish oil and flaxseed (so it might not work for you).

 

We've focused on trying to increase his intake with foods rich in O-3, like fish, but also walnuts, flaxseed (which was already mentioned), broccoli, navy, kidney and soybeasn, canola oil, cantaloupe, spinach, etc... We also use soy milk and butter infused with flaxseed oil (smart balance) which have also helped us boost his intake without having to use supplements.

 

Hope this helps!

Edited by airial95
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