Your thoughts on probiotics with strep in them?

[Stephanie2]

That's interesting b/c our DAN told me that he doesnt' think that the strep in probiotics affects pandas. He may be right but I can't help but listen to the moms on the forums on this one. Also, I gave my 5 yo one from kirkman with strep in it a year ago and he did TERRIBLY and started a new tic! After 10 days I ditched it and decided no more strep! Although, I did just give him soy yogurt with strep in it

 

Stephanie

 

Our Dan doctor told us to stop giving DS the probioitcs with the strep strain. I dont remember the name but it was a kirkman product and it has been several years since he stopped taking it. I also stopped giving him the coconut yogurt becasue of the strep strain. We are just avoiding it all together. You always hear about the good strep. Well I dont think even the good is good for our kids!

 

 

stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

[Johnsmom]

Dont get me wrong, I think the DAN protocol has helped DS tremedously!!!!. My husband and I call it D.A.R.T. Darts At Random Therpies. Thats all we do is throw em and see where they land. But a strep strain? C'mon. These doctors have their hearts in the right places but they are actually just looking to us for all the answers. I vote no strep at all!!!!

 

 

quote name='Stephanie2' date='May 16 2010, 02:49 PM' post='67819']

That's interesting b/c our DAN told me that he doesnt' think that the strep in probiotics affects pandas. He may be right but I can't help but listen to the moms on the forums on this one. Also, I gave my 5 yo one from kirkman with strep in it a year ago and he did TERRIBLY and started a new tic! After 10 days I ditched it and decided no more strep! Although, I did just give him soy yogurt with strep in it

 

Stephanie

 

Our Dan doctor told us to stop giving DS the probioitcs with the strep strain. I dont remember the name but it was a kirkman product and it has been several years since he stopped taking it. I also stopped giving him the coconut yogurt becasue of the strep strain. We are just avoiding it all together. You always hear about the good strep. Well I dont think even the good is good for our kids!

 

 

stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

[peglem]

What I think, is that many strains of strep are a part of normal bowel and skin flora...there's really no avoiding it. Its all about balance. If probios containing strains of strep cause a bad reaction in your child- don't use them. They are probably skewing the balance of the flora.

[Kayanne]

What I think, is that many strains of strep are a part of normal bowel and skin flora...there's really no avoiding it. Its all about balance. If probios containing strains of strep cause a bad reaction in your child- don't use them. They are probably skewing the balance of the flora.

I agree with peg...I just think if you are in a good spot, then possibly trying a probiotic with a strep strain to see how your child does is probably okay...my daughter drinks lifeway keifer a lot, it has some strep strains...and she doesn't seem to react to it at all...however, if I am actually purchasing a probiotic, then I avoid the ones with strep.

[AmberM]

I've also read of lots of asd/pandas kids having huge problems with strep strains. From what I've read, it seems to be all trial and error. Some kids are fine and some are not. That's not very helpful...... that's the most annoying thing in the world of autism though, so many kids react so differently to treatments and supplements. My dd cannot tolerate dairy, rice, soy, or coconut so all yogurts and kefirs are out. I can sometimes get her to try a little kombucha but nowhere near the amount she would need to benefit. And getting fermented foods in her is a joke! So, like you, we are stuck with probios. My dd also has the added joy of high oxalates. We've been using VSL#3 now for about a year and have seen no problems with it. I took a break from it for 2 mos to see if anything changed and all we saw was a huge increase in yeast and constipation. But I know lots of kids go insane on VSL#3!

 

It's all so confusing. I may switch to Klaire labs detox support to see if that makes a difference. You just need a lot more capsules to hit that high bacteria count. My dd does fine on culturrelle too which I know makes a lot of kids crazy. But try to give her vitamin c and she'll have burning lava poop for days and blisters on her bum....... go figure.

-Amber

[Stephanie2]

Amber, Scott had suggested VSL3 for my 5yo but I just couldn't do it with the dairy and strep in it. He didn't think it would bother him, but I went with Custom Probiotics, have you tried it? You can get really high, it is in powder form. No dairy, no strep.

 

BTW, are you you using Buffered Vit. C?

 

Stephanie

 

I've also read of lots of asd/pandas kids having huge problems with strep strains. From what I've read, it seems to be all trial and error. Some kids are fine and some are not. That's not very helpful...... that's the most annoying thing in the world of autism though, so many kids react so differently to treatments and supplements. My dd cannot tolerate dairy, rice, soy, or coconut so all yogurts and kefirs are out. I can sometimes get her to try a little kombucha but nowhere near the amount she would need to benefit. And getting fermented foods in her is a joke! So, like you, we are stuck with probios. My dd also has the added joy of high oxalates. We've been using VSL#3 now for about a year and have seen no problems with it. I took a break from it for 2 mos to see if anything changed and all we saw was a huge increase in yeast and constipation. But I know lots of kids go insane on VSL#3!

 

It's all so confusing. I may switch to Klaire labs detox support to see if that makes a difference. You just need a lot more capsules to hit that high bacteria count. My dd does fine on culturrelle too which I know makes a lot of kids crazy. But try to give her vitamin c and she'll have burning lava poop for days and blisters on her bum....... go figure.

-Amber

[AmberM]

Hi Stephanie,

do you buy the d-lactate free? How long does a bottle typically last....I'm guessing you do the adult dose? I may have to try that stuff.

 

We do use buffered c but it still causes a lot of issues. I went to a seminar recently where Dr. Bui was speaking and he was saying that antioxidants can be really hard on inflamed guts. We have our g.i. consult on thursday and I'm really hoping to get some help for this kiddo!

-Amber

[Stephanie2]

Yes we use d-lactate free. Hard to say how long it lasts. I give each boy 400 bill per day so not very long (a month or so for the large bottle). 400 bill is 2 adult scoops per day.

 

I am glad you told me that high dose buffered vit c is hard on inflamed guts b/c my 2 yo has a lot of gut inflammation and I have recently increased his vit c to counteract the constipation with spironolactone. I will keep that in mind in case it causes problems. What would I see as a problem? Would his belly be distended? Would his poop hurt or irritate his rear end? Tummy ache?

 

Stephanie

Hi Stephanie,

do you buy the d-lactate free? How long does a bottle typically last....I'm guessing you do the adult dose? I may have to try that stuff.

 

We do use buffered c but it still causes a lot of issues. I went to a seminar recently where Dr. Bui was speaking and he was saying that antioxidants can be really hard on inflamed guts. We have our g.i. consult on thursday and I'm really hoping to get some help for this kiddo!

-Amber

[KaraM]

We have Stonyfield Farm - Whole Milk French Vanilla - it has one S - S. thermophilius. We've been giving about 1/2 cup a day to my duaghter who has been on zithromax for about 5 weeks. It does not seem to be causing a problem.

 

Kara

 

I'm thinking why risk it if there are other brands out there that don't have any strep strands in them? What are the yogurt brands that don't have any strep in them? Anyone know (or have some in the fridge to check?)I just rchecked probiotics we have on hand (I like to mix up the brands so he ges as many different strands as possible)

Lifeway Organic Kefir bottle - it has two that start with "s."...

Yum Yum Dophilis" - these are chewable tabs, and they don not have any" s." strands

Attune Probaotic Granoloa Bars - no "s." strands

 

We also eat alot of yoplait yogurt...but I don't happend to have any in fridge right now.

[AmberM]

Audrey gets poop that burns her and causes blisters from vitamin c. Dr. Bui was just saying that lots of the supplements that seem really benign can still cause problems with kids that have really messed up guts. He said he's seem a lot of kids having issues with vitamin c. They're all so different though. Does your little guy have a lot of bloating....what are his inflammation symptoms? We had the KUB done last week and it showed that Audrey was completely full of poop and gas. It's really weird though because I don't think I've seen her tummy so flat in a long time. We've had to resort to miralax and suppositories........ I hate both of those but I don't want to end up in the emergency room with a blockage.

 

We're still waiting to talk to Dr. Jerry on Monday about the MRI results. I'm hoping everything looked good on that.

[Stephanie2]

My 2yo son's inflammation problems show up as diarrhea, gas and issues with digesting food (tested very low on all aminos, etc.). His stool analysis showed his Eosinophil X protein to be very high. Don't know much about that but doc said it can be caused by many things including celiac. I had him tested for celiac but he was GFCF so it would naturally come back negative. Yes, he is always bloated but he is always on those darn antibiotics! I think most of the bloating stems from yeast. I get it under control and then another abx comes along... I have never had a KUB, maybe I should. He poops twice a day right now, seems normal consistency and color. His tummy is slightly bloated. Should I be concerned?

 

Good luck with the MRI results and let me know how it goes. Don't freak if there is Chiari (or anything else). At first, it felt like a death sentence but it has turned out to be a really benign problem for my son. He has had some issues in the past but I think he may be growing out of it, which can happen with some kids. I was told no contact sports for him...hope he doesn't mind!

 

Stephanie

Audrey gets poop that burns her and causes blisters from vitamin c. Dr. Bui was just saying that lots of the supplements that seem really benign can still cause problems with kids that have really messed up guts. He said he's seem a lot of kids having issues with vitamin c. They're all so different though. Does your little guy have a lot of bloating....what are his inflammation symptoms? We had the KUB done last week and it showed that Audrey was completely full of poop and gas. It's really weird though because I don't think I've seen her tummy so flat in a long time. We've had to resort to miralax and suppositories........ I hate both of those but I don't want to end up in the emergency room with a blockage.

 

We're still waiting to talk to Dr. Jerry on Monday about the MRI results. I'm hoping everything looked good on that.

[Santi]

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

Stephanie,

 

I can't thank you enough for posting this message. I just checked the probiotics that I have been giving my son (Klaire Labs) and it has 400+ strep in it (why would this be put in a probiotic?). I did see an increase in behaviors and especially tics in my son while on it. I am watching him closely now since taking him off. Could this be part of his problems? Andrea

[Santi]

Does your child eat yogurt? I am wondering if I need to be THAT uptight about this!! Unfortunately, I AM that uptight b/c I am afraid to give him any more yogurt!!

 

This disease play weird tricks with our heads!!!

 

Stephanie

 

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

 

We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep.

 

- Karen

 

Stephanie, I just looked at all the yogurts in our house and THEY ALL CONTAIN STREP! My son eats sooooooo much of this. Please explain this strep thing to me. How can they put strep in food? Andrea

[Stephanie2]

It could be part of the problem, but make sure you get him on another probiotic! We use Custom Probiotics (D-lactate free formula). It has made a huge difference in both boys in tolerating the antibiotics.

 

Stephanie

 

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

Stephanie,

 

I can't thank you enough for posting this message. I just checked the probiotics that I have been giving my son (Klaire Labs) and it has 400+ strep in it (why would this be put in a probiotic?). I did see an increase in behaviors and especially tics in my son while on it. I am watching him closely now since taking him off. Could this be part of his problems? Andrea

[Santi]

It could be part of the problem, but make sure you get him on another probiotic! We use Custom Probiotics (D-lactate free formula). It has made a huge difference in both boys in tolerating the antibiotics.

 

Stephanie

 

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

Stephanie,

 

I can't thank you enough for posting this message. I just checked the probiotics that I have been giving my son (Klaire Labs) and it has 400+ strep in it (why would this be put in a probiotic?). I did see an increase in behaviors and especially tics in my son while on it. I am watching him closely now since taking him off. Could this be part of his problems? Andrea

Thanks I'll try to find in health food store. Andrea