PANDAS kids not tolerating Lrhamnosus?

[Kimflow]

Hi,

 

I read this thread on a yahoo group. The poster said that many do not know that some PANDAS kids do not tolerate Lactobacillus rhamnosus. Isn't this Culturelle? So we have been using it 1-2 times a day to avoid clostridia from the antibiotics.

 

Have any of you found that your children do not tolerate the Culturelle. I know that some kids do not tolerate the Sach. Boulardii.

If you have, what probiotics do you use? None.

 

Thanks.

[MomWithOCDSon]

There are several different lactobillus organisms. I believe that Culturelle is actually lactobillus g, which, just based on the nomenclature, I would think is different from Lrhamnosus. I have a probiotic blend manufactured by Renew Life that includes 7 different strains of lactobillus bacteria!

 

Our DS does well with both Culturelle/lactobillus g and sach b. But there are a number of other strains available if your child does not react well to these; another good strain family is bifidobacterium, which also has several different sub-strains.

[smartyjones]

my son (actually older ds -- symptomatic but not technically "diagnosed" pandas -- not symptomatic now - last year -- had SEVERE reaction to probiotics. it was a very high level, very reputable product. i do believe it had l rhamnosus in it. he had symptoms similar to kids who have trouble with probiotics who have had short bowel resections. this is over a year ago, so if you need more info, i can look it up to give you accurate info. we see an integrative MD who has us on a probiotic -- i think only lact b and one other strain. i thought we should up it and got this other product. a week or so after ds started it, he started exacerbating. due to posts here, i started putting 2 and 2 together -- actually it was a while so not so easy math. anyway, at our next appt, our dr energy tested this product and said was very bad for ds. i think it was a few weeks off, and he started losing those symptoms.

 

 

one of those things that medical data exists that describes what he experienced but only in a very specific situation that he did not have. conventional medicine would likely describe as "true, true and unrelated" but there is absolutely NO doubt in my mind it was not only related but the exact cause of that trouble.

 

younger, "pandas" son would never take that product b/c of the smell .... i think it may have turned out for the best for us.

 

 

were you seeing troubles with your child or were you just curious from your reading?

[LNN]

Here's a good site on a variety of probiotic strains http://probiotic.org/lactobacillus-rhamnosus.htm Hard to say from this site what specific strains might be lumped under the heading GG. So it's not clear to me if Culturelle contains this or not. But you could always do a trial on something else.

 

I personally prefer brands that are refrigerated - just makes me feel like more of the little guys are alive when they go into the gut. But no scientific basis for this - just my bias. And for the price of Culturelle, you can find other brands that are both refrigerated and/or contain higher CFUs or different strains. So I'd suggest rotating off of Culturelle and seeing if a different brand makes any difference. Realize that giving large amounts right off the bat can cause gas/discomfort and theoretically issues related to die off of a bad bacteria being crowded out by the probiotic strains. So it's about balance - not so low that yeast has a foot in the door but not so high that the gut gets overwhelmed all at once.

 

Also, from personal experience, I'm not sure probiotics alone is enough to fend off yeast. It's a good part of the plan, but after years of relying on probiotics, I came to realize that an unexplainable flair was actually due to yeast. I added garlic pills and after a few days of die-off behavior, both kids showed big behavior improvements. I found this site helpful http://www.medicalinsider.com/bacterial.html#top. you can also google "natural yeast treatments" for other ideas. I think oregano is also a good option and is a good prophylactic anti-viral as well (DD seems to be allergic to it, so we stick with garlic).

 

My son is one who reacts badly to Sacc B. So we've looked at options in addition to probiotics (both kids use Theralac daily). But even with probiotics and garlic on board, DD still struggles with it sometimes. She is now on a tincture called A-FNG from Byron White and it seems to help.

 

If you suspect yeast, ask for a blood test and possibly diflucan/nystatin, followed by a longer term anti-yeast plan. I was amazed at how similar yeast problems mimic PANS behaviors (thanks JAG).

[TheresaC]

Our probiotic is a blend of:

Lactobaciluus acidophilus (CUL-60)

Lactobaciluus acidophilus (CUL-21)

Bifudibacterium bifidum (CUL-20)

Bifudibacterium lactis (CUL-34)

Lactobacillus rhamnosus (CUL-63)

L-glutamine

 

It is labeled as HLC MindLinx capsules, pharmax brand, manufactured by Seroyal.

 

My dd has done well with them.