BE CAREFUL TAKING A PROBIOTIC SUPPLEMENTS

[Phasmid]

I am writing this because I have seen many accounts of parents giving (and recommending to others) "probiotics" to their children with PANDAS. I am speaking from experience when I say you should be really careful when you do! We saw horrible increases in symptoms whenever we gave a probiotic called Culturelle- a dried preparation of many kinds of "normal flora" bacteria. I tried several times and got the same result. I threw it away. Then I tried another dried preparation of beneficial yeast called Saccharomyces boullardii (Florastor). My son reacted to that as well each time he took it. I threw it away. I then went back to the live culture I had been giving him for some time, available in the grocery store milk section, called Kefir by Lifeway. I wondered if this was as good as taking the dried, super concentrated formulations. Using my skills in microbiology, I made smears of this live culture on a microscope slide and examined under high power on my microscope. It is TEEMING with living cells, billions of them. My son never reacted to the fresh, live cultures in the form of Kefir. I am confident that the 10 species present in the Kefir are present in sufficient numbers to replenish any knocked out gut flora. Two other parents reported the same negative effect by the Culturelle and Florastor. I strongly suspected that the huge load of bacteria (or yeast) being poured into the gut was illiciting some sort of strong immune response (the gut is where most immune cells reside). Our physician confirmed my suspicion, explaining why these formulations might make things worse. So... if you are using one of these super concentrated, dried probiotic formulations, you may want to check if they are part of the problem instead of part of the solution!

Edited April 30, 2010 by phasmid@earthlink.net

[lynn]

I always wondered why DS never took to probiotics. I find that Candida Clear (by NOW), which contains biotin and yeast killer herbs, works much better (along with kefir, but taken separately). I'll have to look up whether Candida Clear fights with antibiotics though

[AmberM]

We use probiotics here with now problems but my dd really has a lot of gut issues. I have read of a lot of kids having issues with the culturrelle. I'm not sure if you were using the green box or the yellow but the yellow has casein which some kids react to. The green has inulin, which some kids react too. I've also heard of several kids reacting to anything with strep strains in it.... even yogurt. Even though the strep is supposed to be beneficial, it can be a problem in kids that already have "confused" systems. I really like the Klaire labs formulas of probiotics. The quality is excellent and they have several choices without strep strains.

 

My daughter has to be dairy free so we can't do kefir or coconut kefir but we've had good experiences with kombucha as well as fermented veggies (kraut). I think both have sach b. strains though so that may be a problem at your house. It's incredible how different everyone reacts!

-Amber

[Chemar]

my son has always reacted very negatively to any probiotics other than Kefir or Stoneyfield Farms plain fatfree yoghurt. We too have found that these fully supply our probiotic needs as a family

 

we do all take the Candida Clear by NOW for one week of every month as well

[dcmom]

Interesting...

 

I have been giving Culturell and Florastor, alternately. Not really seeing a reaction one way or the other, that I know of.

 

I would prefer to do the kefir, however. How much Kefir do you give daily?

[Phasmid]

I give a small juice class (6 oz?) full about once per day if i can remember! I give about an hour after his biaxin dose in the morning.

 

 

 

 

Interesting...

 

I have been giving Culturell and Florastor, alternately. Not really seeing a reaction one way or the other, that I know of.

 

I would prefer to do the kefir, however. How much Kefir do you give daily?

[thereishope]

Thanks for this post. I always just assumed Kefir wasn't as good as taking a supplement but that it was better than nothing. This is very good to know!

[NancyD]

I always wondered why dd could never take most probiotics, especially culturelle. Always made her rages worse and she was extremely hyper. The only probiotic she can take (and has been taking for 10 years) is Bifido Factor.

 

Nancy

[Phasmid]

Amazing.

 

 

 

I always wondered why dd could never take most probiotics, especially culturelle. Always made her rages worse and she was extremely hyper. The only probiotic she can take (and has been taking for 10 years) is Bifido Factor.

 

Nancy

[MomWithOCDSon]

Like so much else with PANDAS, response must vary significantly by individual.

 

We've give both FloraStor and Culterelle to no ill effects, as well as various other pill-form probiotics in significant measure. Right now our "biggest gun" in the probiotic arsenal is a pill-forum supplement from Whole Foods under the brand "Renew Life:" 50 billion organisms per capsule, and high bifido content. Again, no ill effects so far as we can tell.

 

DS did formerly eat lots of yogurt, but now that we're trying to go dairy-free, that's not much of an option. He never liked Kefir anyway, no matter which flavor I tried. DH wound up drinking it all!

[Stephanie2]

You bring up a really good point about the probiotics creating an "immune response" and it is true that they do. However I have 2 thoughts on that:

 

One, the immune response over time diminishes (at least that is what I hear) but the probiotics still take up "space" in the gut, pushing out the bad organisms (bacteria/yeast/parasites).

 

Two, with most of us using antibiotics long-term you almost have no choice but to use the high-doses of probiotics. My son eventually developed a klebsiella infection due him not being on a high enough concentration of probiotics. Let me tell you, you NEVER want your child to get klebsiella!!! He became completely psychotic and violent! Worse than anything we have experienced with pandas (and he is a pretty bad pandas case). This went on until I finally listened to his doctor and upped the probiotics to 400 bill cfu's. The results have been remarkable!

 

Three, I don't know if anyone else has mentioned this, but when you give high doses of probiotics, many kids get a severe die-off reaction. That is normal and it only lasts 3-5 days. The end result is a better kid, though!

 

Anyway, that's just my take on it. I have read many posts regarding moms getting really good results with kefir, etc. I just wonder if it is enough for our kids.

 

Stephanie

I am writing this because I have seen many accounts of parents giving (and recommending to others) "probiotics" to their children with PANDAS. I am speaking from experience when I say you should be really careful when you do! We saw horrible increases in symptoms whenever we gave a probiotic called Culturelle- a dried preparation of many kinds of "normal flora" bacteria. I tried several times and got the same result. I threw it away. Then I tried another dried preparation of beneficial yeast called Saccharomyces boullardii (Florastor). My son reacted to that as well each time he took it. I threw it away. I then went back to the live culture I had been giving him for some time, available in the grocery store milk section, called Kefir by Lifeway. I wondered if this was as good as taking the dried, super concentrated formulations. Using my skills in microbiology, I made smears of this live culture on a microscope slide and examined under high power on my microscope. It is TEEMING with living cells, billions of them. My son never reacted to the fresh, live cultures in the form of Kefir. I am confident that the 10 species present in the Kefir are present in sufficient numbers to replenish any knocked out gut flora. Two other parents reported the same negative effect by the Culturelle and Florastor. I strongly suspected that the huge load of bacteria (or yeast) being poured into the gut was illiciting some sort of strong immune response (the gut is where most immune cells reside). Our physician confirmed my suspicion, explaining why these formulations might make things worse. So... if you are using one of these super concentrated, dried probiotic formulations, you may want to check if they are part of the problem instead of part of the solution!

Edited May 1, 2010 by Stephanie2

[EAMom]

Interesting....I think Culturelle is the brand "saving sammy" used?

 

I wish my dd would drink Kefir!

 

Sauerkraut and Kim Chee also have probiotics...of course she won't eat those either.

[Chemar]

I give a small juice class (6 oz?) full about once per day if i can remember! I give about an hour after his biaxin dose in the morning.

 

we were taught that probiotics and antibiotics should have at least 2-3 hrs time lag or else the antibiotic just begins to wipe out the probiotics

[melanie]

I give a small juice class (6 oz?) full about once per day if i can remember! I give about an hour after his biaxin dose in the morning.

 

we were taught that probiotics and antibiotics should have at least 2-3 hrs time lag or else the antibiotic just begins to wipe out the probiotics

 

 

OMG Ive been saying this for years !! SO which one doesnt ??does keifer come in a pill?? Not live ??

[Phasmid]

Kefir is a drinkable yogurt, not a capsule