Advice on Probiotics/Omega 3 for Tic kiddo Please

[DsMom]

Just changed DS13's nightly probiotic from HLC High Potency to Ultimate Flora and I swear he was worse after. I have also thought on occasion that he might be worse after the HLC as well...which is why I wanted to change it up and see if there was any improvement. I also changed his AM dose from HLC to Culturelle, which I think he's tolerating pretty well.

 

But, I know so many of you wonderful people have already trialed so many I wanted your advice.

 

If you have a tic child are there any Probiotics you have tried that have made things worse, and any you have tried that made things better...or at least didn't escalate behaviors?

 

Also, just was reading an old post where Beesknees had mentioned going w/ a low dose Omega 3 sup if child is sensi to O3's, which mine is, and I have just basically given up on D and O3;'s due to the crazy that occurs after.

 

But now I'm wondering if there are any rec's on that front as well. We don't do gummy chewables because he won't touch gelatin (vegetarian at age 8).

 

As always, I am so thankful for any suggestions.

[Crunchfly]

We use Culturelle and Coromega. Neither seem to have any effect, positive or negative on my ds's tics.

[Mayzoo]

Here is a vegetarian Omega 3 softgel 100mg http://www.amazon.com/dp/B001EHLSSG

 

Here is a website that details vegetarian food sources for omega 3 ie flax seed crushed and added to foods: http://vegetariankids.co.uk/easy-ways-to-add-omega-3-for-vegetarian-children/

 

This says it is a vegetarian gummy, but maybe they mean just the source of the omega 3 is vegetarian: http://www.supersup.com/hero-nutritionals-yummi-bears-vegetarian-fish-free-omega-gummy-vitamins-for-children-natural-fruit-90-gummy-bears-613098683828

 

And we use Healthy origins Probiotic with no issues: http://www.amazon.com/Healthy-Origins-Probiotic-Vegetarian-Multi-Pack/dp/B003OD3XYA/ref=sr_1_3?ie=UTF8&qid=1369605346&sr=8-3&keywords=health+origins+probiotic

Edited May 26, 2013 by Mayzoo

[LNN]

My son needs to avoid Omega 3s because he has pyroluria. Omega 3s and 6s compete and those with pyroluria need Omega 6s (evening primrose oil is an O6 that is non-inflammatory). Trust your gut. If he seems worse when on O3, I'd avoid them. We have found time and again, what is good for "most people" has not always been good for us.

 

My DS gets angry and mean on Sacc Boulardis - which is a yeast probiotic. "Most people" find this to be a helpful type of yeast that crowds out candida, but I tried it several times and always got the same results. He does well on TruFlora, Theralac, and Ultimate Flora. I personally avoid non-refrigerated products, as I doubt how many little guys survive months in hot warehouses.

 

FWIW - some docs recommend taking probiotics when stomach acid is low - like at bedtime, to allow better survival through the stomach. So what we did was abx in the morning, abx at dinner and then probiotics 2+hrs later at bedtime.

 

(no type of probiotics seemed to have any effect on tics one way or the other) His tics seemed to have more to do with detox and inflammation.

Edited May 27, 2013 by LLM

[DsMom]

Thank you all for the recommendations.

LLM I always like your thoughts because my DS and yours seem to track somewhat similarly. That said, I think that Ultimate Flora might have made him feel itchier. I agree, a nighttime dose is optimal and we always strive for that time and an additional one in the day for good measure. With him always on an ABX of some sort the last year it makes me nervous if he's not taking probiotics. CDiff is always in the back of my mind, and yeast, I don't even like to think on that either.

I think Omega 3 is just going to have to be tabled. I do have him taking EPO, and zinc again. No change of note of course. Wish I could say that there has been.

[airial95]

Dr. Murphy advised us to try an O3 supplement that does NOT have O6 in it. O6 can cause inflammation in some kids, which can be a big problem for our kids. If you have tried O3 supplements before, I would check to see if they had O6 as well, that might be part of the problem. I have found that I have to look carefully for one that is O6 free.

[LNN]

Many Omega 6's are inflammatory. But my understanding is that evening primrose oil is not.

 

D's Mom - have you tested for pyroluria? Have you looked into 23andMe to look at his Vit D receptor status?

I ask because with pyroluria, you need huge doses of B6 and zinc, yet ironically, you also need to keep an eye on/supplement copper. High doses of zinc can deplete copper and copper plays a role in your MAO gene, which regulates how quickly your body degrades serotonin and dopamine.

 

My DS has an issue with his VDR Taq gene, his COMT gene and his MAO gene - all of which conspire to make him high in dopamine/a slow degrader or dopamine and an overmethylator. He ends up flooded with the stuff, which can contribute to anger, aggression, bossiness...dopamine also plays a role in tics (DS was once a huge ticcer). Copper plays a role in upregulating MAO (i.e. making it work faster, which is what my DS needs). So we supplement with both zinc and copper. I also limit Vit D because in him, it adds to his dopamine problem (tho I will probably add low dose in the winter).

 

We've also used garlic to keep yeast at bay in addition to probiotics.

 

You may want to look at these things more closely (the pyroluria and genetics). And perhaps test zinc/copper levels.

[DsMom]

LLM, Yep, we did the test for Pyroluria, he was borderline (our test was slightly diff than yours if I remember correctly; DS was an 11 and at 15 our test is considered positive).

 

He's definitely low zinc and something might be up with the copper too. We just tested for copper levels and hope to have results today to discuss w/ Dr. T tomorrow.

 

DS was on Core (BioPure) for at least 8 months with no changes, but as a result of one of your last posts on a question of mine I am back to supping zinc for him. I also sup EPO, but not O3s because the itch, tics and crazy all go up when he has very much of it. Also the D3 seems to cause similar reactions in him so I'm just keeping any concentrated doses of it away from him.

 

I've been on the fence about the 23andMe only because I don't know if I will be able to figure out what all the results are going to mean. I am trying to channel you on a lot of this but honesty its just so much. That said, I need to get it going.

 

I was going to try to PM you but I don't know how, so I'll just share this in case you aren't already aware of it as I believe you use BioPure Core.

Nature Pure Nutrition is a BioPure on-line retailer that is located in Florida, & they discount all BioPure that they sell, We were doing Sophia Healthcare's (Klinghardt) regime for many months and we saved a lot shopping at NPN> now they are offering a flat 20% off w/ a coupon code THANKYOU20 and free shipping on any amount for the next 30 days.

[LNN]

Thanks for the Core link! I sent you a PM - go to the upper right corner of the forum page and you'll see a pull down arrow next to your screen name. The drop down menu will give you an option to check your messages. To send a PM, you'd click on my name and you'd see an option to send me a message.