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working on some new thoughts

18K views 280 replies 29 participants last post by  Thing1Thing2 
#1 ·
and I have a question for you. for mamas with allergic/sensitive kids:

what is the max amount of probiotics you've ever given to your child or yourself?

For what duration?

What else were you doing at that time?

How old was your child?

What did you see?

TIA!
 
#2 ·
We use Custom Probiotics. They say to start with 1 (very very very) small scoop. We did that for a week then bumped up to twice a day (morning and night). So he's on 2 scoops a day and it's been about 3 months now. I will keep him on for a while then back down to 1 scoop/day (we have tried this before and it didn't work at all!) I am thinking another 3 months (6 months total) and trying to back off again.

My DS is 4 years old.

He had never had a normal BM EVER till we got him on this. It has totally changed that for him!
 
#3 ·
Quote:
Originally Posted by scsigrl View Post

We use Custom Probiotics. They say to start with 1 (very very very) small scoop. We did that for a week then bumped up to twice a day (morning and night). So he's on 2 scoops a day and it's been about 3 months now. I will keep him on for a while then back down to 1 scoop/day (we have tried this before and it didn't work at all!) I am thinking another 3 months (6 months total) and trying to back off again.

My DS is 4 years old.

He had never had a normal BM EVER till we got him on this. It has totally changed that for him!
have you ever gone higher? I know they're pricey-just curious.

what are his bowels like now-in other words...what do you consider to be normal?

thanks!
 
#4 ·
We got a sample from them that lasted us a month! I know they are pricy and I didn't want to be stuck paying that for something that wasn't going to work. We figured it out and it's about $10/month. The scoop is seriously SMALL! Like a fingernail full. The smaller bottle we purchased should last us 10 months or so. We have never gone higher than 2 small scoops a day. They are doing what we want them to so that's where we stopped

I hope this isn't TMI but you asked ;) lol

He never had a solid BM. They were always pasty, grainy and nothing normal. We didn't know what his BM's should have been like (he is our first) till we had DD and she started eating solids and we were like....hummmmm, his aren't normal. Within a week he was having normal, formed, not making me gag diapers for the first time in his life. It was seriously amazing and we could not be happier. We thought going GF would change everything (he has Celiac's) but it didn't till the probiotics.
 
#5 ·
yes, I'm familiar with their adorable little scoops! LOL!

Okay, thank you for the input! It's not too much info. In fact, I'll ask a bit more if that's okay. What's the frequency? How often does he have a bowel movement and is he regular? As in, how predictable is he?

I have to go check out if custom lists the number of organisms per scoop...

ETA-they do. for a child 40 billion cfu's.

Thanks!
 
#6 ·
After telling them our issues, they suggested the 6 strain. This is the one we use. http://www.customprobiotics.net/custom-probiotics-six-cultures.htm

He is *usually* a once a day guy now. He was 2-3 times a day before. Once in a while he'll throw us for a loop with two in a day or he'll skip a day but for the most part it is once a day.

Yeah, poop with allergy Mom's isn't a scary thing but I just wanted to be sure I wasn't grossing you out :)
 
#11 ·
Let's see what I can remember...

Probiotics never seemed to do anything at all for me. The ONE time I noticed a maybe effect was taking 2-3 VSL#3 in one day, with no ramp up period. The middle of that night I had a weird fever and felt awful/shaky, but then was pretty much fine the next day. I didn't keep up that dose, it was a one shot deal cause 2yo dd stuffed them in my mouth
orngtongue.gif
eta: I lied. When dd was about 9mo, I was drinking about a quart of water kefir a day. After a week or so at that dose, one day I felt yucky (lightheaded, clammy) and had loose stool.

Right before ds was born, I was drinking 2 cups of cultured-warm-from-the-goat kefir per day because I was feeling yeasty. No die off (I started slow but ramped up quickly) and no benefit stool or other symptom-wise, either, until after ds was born when it seemed to go away on its own.

I started on pancreatic enzymes when ds was 2mo, and got major die off/detox from them. After one increase, I got mastitis (no engorgement, never got it with dd) and ended up on abx. Felt FANTASTIC on the abx. Kept up with slow enzyme increases. Eventually, got the same yeasty(?) stool symptoms and this time, a big helping of sauerkraut squashed it, easy. This still comes back if I forget ferments for more than a week or two.

In November, I got the stomach flu and didn't eat for two days. Again, felt fantastic afterwards. Interestingly, dd felt way better for a couple days after HER bout with the flu, but has been seriously craving carbs and sweets ever since.

On this yeast remedy, it feels like the enzyme die off, only way more intense. And I got my first ever sinus infection right after starting it.

-------

As a kid (12yo) I tested IgG sensitive to mold/yeast/fungus and did some antifungals along with an elimination diet and came back sensitive to less when I was retested, but there were still positives to the mold/yeast/fungus stuff. (This was Dr Marinkovich, if you happen to have ever heard of him).

Genetic-wise, I have at least one copy of the VDR Fok SNP that according to Deb/Yasko has to do with harboring bacteria/bacterial die off (I know I'm remembering the details of that wrong).

And non-genetics-wise, I have no reason to think I've EVER had a healthy gut full of bacteria. My mom was full of mercury, I was born by c-sec, and if my mom had had access to allergy forums when I was a baby, I was a classic case. I had strep a lot in elementary school, and was on perma-antibiotics for acne as a teen (they didn't work).

-------

I've given medium-dose pbx to dd and ds, nothing that I would consider very high, and have never noticed much effect from them. Every once in a while, dd can't get enough sauerkraut. Ds can *never* get enough sauerkraut, since the first time we offered.
 
#12 ·
bacterial balance controls pH in the GI tract. that's oversimplifying things, but not by that much.

probiotics for long periods of time (so not a one shot deal or even a one week deal) and at high doses have been shown to recolonize the gut however I'm not finding anything reliable that goes past a few weeks, which wouldn't be long enough. PLUS it wouldn't be enough on it's own anyway.

altering the pH via supplemental probiotics *if done correctly* may well allow for proper colonization, a dramatic reduction of sensitivity and an increase in overall wellbeing and nourishment.

Thing is that you'd have to control for the die off/toxins etc. BUT that's what clay is for. Interested to see if your tolerance on other things changed with the regular introduction of clay. That's what I've been seeing in many folks.

I'd be talking about starting at 350 billion cfu's or so per day for adults and increasing until the bowel tolerance is found and stool normalizes showing the pH balance is correct. Of course that's just step one.

Still thinking.
 
#15 ·
How do you choose which strains to use? Do you think food would work as well as supps? Even ten times that much doesn't seem like a lot - Pat has numbers, she tested her water and milk kefir. Water kefir was on the order of 700,000cfu/mL I was definitely drinking full 8oz glasses for months, with no clear effect (of course, that was before I discovered supping, and I obviously was more than a bit depleted). And I was making it with cane sugar - who knows if I had developed that sensitivity yet or not.
 
#16 ·
Oh boy. I could write a book here. I'm game because after crashing in January (reacting to inhalants - either chlorine or ammonia or some kind of breakdown product from them), I ordered "all" my supps, many of which I had been out of for a while, but I'm still not feeling better! SO what piece am I missing? Probiotics, of course. Just ordered CP 6 strain for myself. CP1 did me lots of good, but I also noticed a reduced amount of plaque when I took some of dd's Klaire Infant powder w/salivarius so i decided to get the 6 strain for that. I think per cfu, CP is the cheapest. I have decided that I am worth the investment. All the better if I can manage to get dd on it. I have had spectacular results with it and since hindsight is 20/20, I think it has been the most important part of my puzzle. I am sure PBX are most important for dd, too, just haven't managed to get the progress I want yet.

Dd, age 4.5, gluten, dairy, soy, egg, apple, coconut intolerant, main intolerance symptoms rash, poor feeding/growth, severe constipation, spd:

As of right now and for most of the last year- she takes Kirkman's bifidus, 1/day - the only thing that has helped and not caused wicked die-off such that she couldn't poop

Tried in the past, from most recent:

2010: MegaFoods MegaFlora, CP1, Pharmax Intensive, Pharmax Mindlinx, Klaire Infant Powder

2009: Klaire Infant Powder, CP1, Biogaia, Culturelle, Pharmax High Potency

2008: Natren Bifidus, PB8, UAS DDS Plus

2007: Natren Bifidus, Primadophilus something

The highest I have gone with dd would be the full dose of Kirkman bifidus - 15 billion cfus, and Klaire Labs infant powder full dose - 10 billion. These are the only 2 she has tolerated - or should I say these are the only 2 I could tolerate her taking. I saw no effect from anything pre-Klaire Labs which I started giving her in the spring of 2009 I think. The main problem has been dealing with die-off, she gets extremely constipated even with mag & SA, and gets a full body rash and then of course doesn't want to eat or sleep. Most recently, I tried her on CP1 and the Pharmax products with as low a dose as I possibly could. I put the smallest amount of powder in water to dilute and gave her a portion of that and she still couldn't poop with just that. I haven't pushed through since I become a very bad mother when I don't get any sleep, I still haven't caught up from the first 3 1/2 years of dd's life when she didn't sleep. I had set goals for trying again: getting her into her own room so at least dp can sleep if she has problems sleeping, get her back on enzymes to help reduce die-off load, reliably get supps into her to make sure pathways are functioning. These are done and so I suppose I will try again with the 6 strain.

Another note: dd also gets extreme die-off from any protease-heavy enzymes. She has been fine with Klaire Labs chewables and Enzymedica Digest. Her poop tends to be on the firm to pebbly side even on a "good" day. She poops, on average, once a day, 28 out 30 days. Broth/juice/smoothies help a TON, but she won't reliably drink/eat them. Smell ranges from compost pile stinky to ammonia. Generally more yellow than brown.

We have done daily veg ferments for close to a year, often before that. Kimchi, pickles, sauerkraut, and other fun stuff in the summer when I have the garden. Been doing 'bucha since last August, very slowly worked up and dd does a shot with each meal. I did make coco yoyo for a year or two before dd's recent reactions to it. Water kefir ended very badly for us - I never noticed anything from it, but the only way I could get dd to try it was with juice and oh boy she can't do that much sals or sugar or something. Looking at our history, I actually felt the best digestive-wise when we moved to MN and I had access to raw milk and I was drinking about a qt of kefir/day. Dd was still reacting then but mood, skin, and growth wise, she was better than she is now and I was a healthier weight, my hair wasn't falling out and prematurely turning grey, etc like it is now. The worse problems came when I got a parasite (I think giardia) in August of that year (2008) and had diarrhea for about 10 days - I lost a TON of weight (I am skinny to begin with) and dumped a toxic cesspool into dd through my bm, and also completely disrupted my gut flora. Between August and December of 2008 is when dd mostly stopped eating (just wanted to nurse), completely stopped pooping on her own, didn't sleep for more than 45 minutes at a time, stopped growing, etc. It was in December that I started reading about celiac (and even pm'd you then, PB!) and decided to pull gluten, which was the point when we started to improve somewhat. Or at least trade one set of symptoms for another, more tolerable set?

Ok, I did write a book, and I might come back and delete some of this.
 
#17 ·
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I'm advidly watching this thread......DS has had mushy, mostly unformed BMs for the last few months. I give him infant strains of probiotics daily (but only about 3! CFUs - it's Natogen). I don't think it's a food issue (DF, almost 100% GF and EF currently), and had removed various things I thought could be suspect for 1+weeks and added back in, and added, then removed, then added back in supps, to no avail. So if I can figure out exactly what strains of probiotics and how much, I'd pony up (gulp!) the money for Custom Probiotics or the like, or even take the plunge and do some water kefir).

Bring on the wisdom ladies!
 
#18 ·
A year ago I started some for DS2. The kind JaneS recommends. I started off really small and couldn't get very far, his behavior was off the wall stubborn - him, but him 10x. Deb and I talked and I thought it was creating a greater GABA/glutamate imbalance than he already has, because of die off. For me though, the reaction clearly showed me it was doing something-with a great potential for good.. I was newly pregnant at the time and couldn't handle behavior from the die off. We didn't use clay. I am debating about using homeopathy to get rid of his aluminum before trying again, so that he won't have such an issue. . . but then I am concerned that with his B12 mutations, thus very low B12 numbers, he won't be able to handle even homeopathic chelating. Clearly this has been on my mind.

All three of us will be doing a stool test next week and my goal is to be able to pinpoint what we need.

Normal amounts don't seem to make a difference for me and I was worried to go higher while pregnant because of metal issues.

Water kefir never seemed to do anything for me.
 
#19 ·
Quote:
Originally Posted by FireWithin View Post

A year ago I started some for DS2. The kind JaneS recommends. I started off really small and couldn't get very far, his behavior was off the wall stubborn - him, but him 10x. Deb and I talked and I thought it was creating a greater GABA/glutamate imbalance than he already has, because of die off. For me though, the reaction clearly showed me it was doing something-with a great potential for good.. I was newly pregnant at the time and couldn't handle behavior from the die off. We didn't use clay. I am debating about using homeopathy to get rid of his aluminum before trying again, so that he won't have such an issue. . . but then I am concerned that with his B12 mutations, thus very low B12 numbers, he won't be able to handle even homeopathic chelating. Clearly this has been on my mind.

All three of us will be doing a stool test next week and my goal is to be able to pinpoint what we need.

Normal amounts don't seem to make a difference for me and I was worried to go higher while pregnant because of metal issues.

Water kefir never seemed to do anything for me.
so would you consider going higher and bypassing the biochemistry with clay? given that you have a pretty clear idea of what a reaction looks like?
 
#20 ·
Quote:
Originally Posted by Theloose View Post

How do you choose which strains to use? Do you think food would work as well as supps? Even ten times that much doesn't seem like a lot - Pat has numbers, she tested her water and milk kefir. Water kefir was on the order of 700,000cfu/mL I was definitely drinking full 8oz glasses for months, with no clear effect (of course, that was before I discovered supping, and I obviously was more than a bit depleted). And I was making it with cane sugar - who knows if I had developed that sensitivity yet or not.
it's going to vary on the presentation. there's precedent in homeopathic medicine in the bowel nosodes.

I'd want to use something more controlled than food for the therapeutic aspect, but after that food would be preferable.
 
#21 ·
Quote:
Originally Posted by deditus View Post

I have decided that I am worth the investment.

Boy, are you!

Dd, age 4.5, gluten, dairy, soy, egg, apple, coconut intolerant, main intolerance symptoms rash, poor feeding/growth, severe constipation, spd:

As of right now and for most of the last year- she takes Kirkman's bifidus, 1/day - the only thing that has helped and not caused wicked die-off such that she couldn't poop

Tried in the past, from most recent:

2010: MegaFoods MegaFlora, CP1, Pharmax Intensive, Pharmax Mindlinx, Klaire Infant Powder

2009: Klaire Infant Powder, CP1, Biogaia, Culturelle, Pharmax High Potency

2008: Natren Bifidus, PB8, UAS DDS Plus

2007: Natren Bifidus, Primadophilus something

The highest I have gone with dd would be the full dose of Kirkman bifidus - 15 billion cfus, and Klaire Labs infant powder full dose - 10 billion. These are the only 2 she has tolerated - or should I say these are the only 2 I could tolerate her taking. I saw no effect from anything pre-Klaire Labs which I started giving her in the spring of 2009 I think. The main problem has been dealing with die-off, she gets extremely constipated even with mag & SA, and gets a full body rash and then of course doesn't want to eat or sleep.
I have worked with a LOT of people who couldn't tolerate probiotics. I have found ways around it for most of them, but then I started thinking that I was missing something obvious. Unfortunately, this is not something that's taught anywhere. So, I've been piecing things together and talking to various companies that run clinical trials on their products and trying to figure it out. I don't think there's a complex answer. I tend to always try and look to the earth for answers. Something did click one day when I was working on a case with someone trying desperately to convince them that it the issue wasn't that what they were doing was incorrect, it was the quantity. That got me thinking even more.

I've also been taking note for some time of pH levels in people that are really sensitive. This along with symptoms of bowel disruption have started making me question things that ARE taught and look for more answers. The standard acid/alkaline balance stuff wasn't cutting it as I'd seen it disproven any number of times.

SO I started playing with probiotic strains and bowel nosodes in people who knew and were happy to experiment with me. However the necessary amounts are high. 320 billion cfu's are a lot! However, what I'm doing is shedding a lot of the other supplements in favor of high dose probiotics, the correct nosodes and clay (which is the best neutral adsorptive and absorptive medium I can come up with that is perfectly safe, fine in large quantities, widely available, cheap and fine for nursing/pregnant women.)

I figured I'd ask here and find what people had done. The stumbling block seems to be die off which most people don't know how to handle (practitioners either.) I have a few tricks, but again...there's an easier way. I know there is. This is something people should be able to do on their own.
 
#23 ·
yes - I think that is a good suggestion. . . got to get some clay first

argh just gave baby girl some probiotics - HLC neonate from pharmax -- there is milk lactose in it. well I'll see how she does now that she is no longer reacting to seeds.
 
#24 ·
Quote:
Originally Posted by Panserbjorne View Post

I have worked with a LOT of people who couldn't tolerate probiotics. I have found ways around it for most of them, but then I started thinking that I was missing something obvious. Unfortunately, this is not something that's taught anywhere. So, I've been piecing things together and talking to various companies that run clinical trials on their products and trying to figure it out. I don't think there's a complex answer. I tend to always try and look to the earth for answers. Something did click one day when I was working on a case with someone trying desperately to convince them that it the issue wasn't that what they were doing was incorrect, it was the quantity. That got me thinking even more.

I've also been taking note for some time of pH levels in people that are really sensitive. This along with symptoms of bowel disruption have started making me question things that ARE taught and look for more answers. The standard acid/alkaline balance stuff wasn't cutting it as I'd seen it disproven any number of times.

SO I started playing with probiotic strains and bowel nosodes in people who knew and were happy to experiment with me. However the necessary amounts are high. 320 billion cfu's are a lot! However, what I'm doing is shedding a lot of the other supplements in favor of high dose probiotics, the correct nosodes and clay (which is the best neutral adsorptive and absorptive medium I can come up with that is perfectly safe, fine in large quantities, widely available, cheap and fine for nursing/pregnant women.)

I figured I'd ask here and find what people had done. The stumbling block seems to be die off which most people don't know how to handle (practitioners either.) I have a few tricks, but again...there's an easier way. I know there is. This is something people should be able to do on their own.
It actually took me months, many months, to order the CP1 the first time (for myself, to help treat parasites). And I was SO scared to take it! It actually took me almost 2 years to finish the 2 bottles I ordered! But it helped so much for me, even at just 50 billion/day, and I have realized that it is a huge piece of the puzzle. I saw my nutrient needs go down DRASTICALLY when I was taking it, but only in hindsight did I realize that it was the probiotics that were helping so much. So I know dd needs it - big time. She is old enough now and more cooperative that I feel like I can push more. And every little thing has helped, but I can't be in this position of continuing to lose foods. I have said for a while that I am in a better place overall than dd because I have been able to push myself more because I know what the die-off means for me - if I am on the verge of a panic attack, I know I'm going too fast and I take some clay! Dd has been poor at communicating when she feels bad, probably because she has always felt bad! The trick is keeping her in a good spot because once she starts to feel bad then she refuses everything you try to do to help. Do I need to email you and work out a payment plan, lol!?!
 
#26 ·
ok I have a question, and could use some opinions.

The probiotics I have, baby pharmax, contains lactose. I gave baby girl some yesterday and I see a splotch on her face. She was fussy last night, but also has a head cold.

I am trying to decide if I should continue with these great, powerful and already purchased probiotics, or find something else.

I have a brand new nephew who a great potential for allergies, and I could pass the probiotics on to him this weekend, so they wouldn't be going to waste.

Are there other baby probiotic brands that are lactose free and high quality?

I will try these for the next two days.
 
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