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No Cheese?


T_Anna

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No, our DS eats lots of cheese . . . probably a bit more than he should.

 

Not all cheese contains strep thermopolis as a culture, and not every kid is sensitive to strep thermopolis even if it's in the cheese.

 

I think Dr. T.'s advice is basically a suggestion that if you can, might be good to avoid because it might cause issues. My personal view is that my kid has enough struggles and things to deal with, and I'm unwilling to add that dietary restriction to his list, as well. I don't see him reacting to cheese, so we stick with it.

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We avoid cow cheese because the casein fraction can be inflammatory. DD11 does use some romano (sheep) or goat cheese sometimes. I can't say that I have seen a difference in her behaviour one way or another. I know if I eat too much brie (yum!) the joints in my feet hurt. Goat brie not so much, but it doesn't taste as good either.

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Dr. T told us to stay away from Strep Therm. too. My DS15 is dairy-free, so he would not get this through food anyway. However, it is a strain in his probiotics, VSL#3. He does not seem bothered by it in the probiotics and he is the type of PANS/PANDAS kid that reacts to the littlest things (like being in the presence of someone who is ill even though he does not get the illness himself).

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Chrissy, just so you're aware-- the article you found is from a company that makes/sells products containing s. thermophilus (Klaire Labs/ProThera), so it may not be the most objective source of information. It seems like not all kids with PANDAS react to s. thermophilus, but it appears some do--at least anecdotally. At this point, much of what we have to go on for our PANDAS kids is based on anecdotal info/evidence and I think many of these issues are not settled or well understood (scientifically)--so we parents have to just pay attention, try what makes sense for our families, go with what works for us, and participate in the larger dialogue about PANDAS to help one another and hopefully lead to more research and evidence-based approaches and therapies. All to say-- the verdict is probably still out about s. thermophilus and it's probably not as simple as whether it is good/bad or safe/unsafe for all kids with PANDAS (no other treatment has been that clearcut for all PANDAS kids at this point, even those that have widely demonstrated benefit or have good evidence to support use for PANDAS).

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Agreed Thenmama. I didn't mean to imply by linking to that article that I accept it as truth. I was just offering another opinion. I know of at least two PANDAS docs who say S. thermo is ok but then i understand others advise to avoid.

 

I have experimented by switching my son's probiotics to one without It and my son's tics are better (he's also mostly dairy free). It's so hard to tell what's a contributing factor....lots of trial and error in our home.

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"Trial and error" is the only proven approach to PANDAS so far :) It is so hard to figure out, and there are so many complicating factors I'm not sure how you'd figure it out with any certainty-- was it the s. therm, casein, allergy/sensitivity, digestive issues, fungus/molds, etc. So trial and error and doing what works is the best way to approach it. That's what we do, too.

 

Oh- and I just pointed that out about the article b/c it's good to remember researcher bias, and to make other readers who may not be familiar with Klaire Labs aware of that possibility. One thing I appreciate about all articles, though--even if I don't entirely trust their objectivity-- are their citations. It's a great way to find more research and info!

 

Glad you've found some things that are helping your son!

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