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Discussion Starter · #1 ·
I'll spare you and myself the pain or re-posting about our horrible experiences with the GI clinic but I'm sure you can imagine, knowing how some mainstream docs are about food intolerances.

Anyhow, the last time we were there was in May. The doc ran a bunch of tests and found some kidney issues and referred us to the nephrologist but never really addressed the chronic diarrhea thing (I think b/c he realized he and I were never going to see eye to eye).

But, DD is now 27 months and continues to have stools that fluctuate between partially formed, mushy applesauce-like consistency, and runny seemingly unrelated to what either of us eat. We've eliminated everything that has come up positive for either of us in IgG and IgE testing. She was negative on 2 celiac blood tests last summer. Food journaling doesn't seem to reveal anything useful, though to be honest I haven't been doing it lately b/c it is so tedious - I go good for a few days and then miss something... We've done a stool analysis on both of us - antibiotics for a GI bacteria followed by 3 months of nystatin powder (we have 1 month left) for DD. Daily probiotics,....

She used to have bloody stools all the time. Now she almost never does, so that's improvement. But the last 2 times I've seen blood I couldn't really trace it to the thing that I know tends to cause blood (soy). In fact the really runny diarrhea seems to correlate more with when she is sick (colds) than with food, and the last 2 blood sitings have both been when she was pretty sick and feverish.

Maybe we've dealt with the food component and there is something else going on?? Maybe some sort of inflammatory response when she gets sick? IBD perhaps? Would that cause specks of blood? The specks of blood really say allergy to me, but I must be missing something. I'm seriously considering going back to the GI and asking for a scope, as much as I would hate to do that for so many reasons. Can anyone point me in a different direction?
 

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In our case it was chronic parasites. Since you can't connect it to any food I'd be looking broader (which I know you tried to do w/GI. We did that too and I can imagine what it was like because I had a horrible experience as well).
Standard parasite labs (if you've done stool tests) only look for a few parasites and they aren't the most common ones that cause chronic issues. Metametrix comprehensive stool would be really helpful for you I think. It found the cause of our loose stool issues that had been going on for years. In addition to checking for parasites (like d. fragilis and b. hominus, both my son had) it looks for bacteria, digestion, celiac markers, immune responses, etc. It's a really good lab if you have a doctor who will order it. We did have to pay up front but our insurance reimbursed us. It would have been worth every cent even if we didn't have insurance reimb.
 

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Discussion Starter · #4 ·
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Originally Posted by JacquelineR View Post
did you go to see the nephrologist?
Yes. We've been back twice. She diagnosed Renal Tubular Acidosis which, in combination with the food sensitivities, explains why DD had such severe reflux as an infant.

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Children with RTA often present in infancy or as toddlers with feeding problems, growth failure, vomiting, and/or recurrent episodes of dehydration.
The RTA is being well controlled now with sodium bicarbinate supplements. But now she has high blood pressure, the most likely cause being something else going on with her kidney (she has bilateral congenital kidney defects and only one is functional). But we haven't yet figured that one out.
 

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Discussion Starter · #5 ·
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Originally Posted by sbgrace View Post
In our case it was chronic parasites. Since you can't connect it to any food I'd be looking broader (which I know you tried to do w/GI. We did that too and I can imagine what it was like because I had a horrible experience as well).
Standard parasite labs (if you've done stool tests) only look for a few parasites and they aren't the most common ones that cause chronic issues. Metametrix comprehensive stool would be really helpful for you I think. It found the cause of our loose stool issues that had been going on for years. In addition to checking for parasites (like d. fragilis and b. hominus, both my son had) it looks for bacteria, digestion, celiac markers, immune responses, etc. It's a really good lab if you have a doctor who will order it. We did have to pay up front but our insurance reimbursed us. It would have been worth every cent even if we didn't have insurance reimb.
Thanks for the tip. I'm pretty sure the stool analysis we did looked for parasites, but I'll check to be sure. It was through Genova diagnostics which I know looks at things most stool analysis does not. But maybe they missed something.

On the subject of stool analysis, one thing that did show up was something that indicates inflammation and my ND said they often see with IBD. But when I looked it up I saw that it can be present in the stool of breastfed babies and since DD still nurses pretty often I figured that was the cause. I forget the name. I'll have to dig up the results and come back.
 

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Discussion Starter · #6 ·
And one other piece of info that might be useful - DD's growth really hasn't improved even with 3 months of nightly growth hormone injections. The endo, who we saw last week, was disappointed with her lack of accelerated growth. That is until she re-measured her and stretched out out to show a 2 cm growth improvement. So if you stretch her she looks like she grew a little, LOL. But even so she is well below the 3rd percentile line on the regular charts and only at the 25th percentile line for girls with Turner Syndrome. Given the fact that DH and I are both tall and that the TS growth charts show even the girs with serious health issues I would expect her to be closer to the 50th at least. At nearly 28 months she is around 31 inches (give or take a 1/2 inch depending on who does the measuring) and 21 lbs.
 

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My advice would be to let the GI rescope her, with strict instructions to biopsy throughout her GI tract *colon, esophagas, small bowel, large bowel* for EOSINOPHILIC DISORDERS. Tell them you want a eosinophil count. Good luck, and I do know it sucks to put your little one through medical testing, but it was necessary for the diagnosis, and now we are able to manage the disorder. Hugs.
 

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Discussion Starter · #8 ·
Okay, I found the Stool Analysis results. I'll spare you the details on Digestion, Metabolic Markers, and Absorption unless someone wants that info. The only things out of the normal range were Acetate was slightly high at 73.6 with a ref range of 44.5-72.4 and her Putrefactive SCFAs were undectable as were Phospholipids. LCFAs were at the very lowest end of the ref range as was pH.

Fecal Lactoferrin was positve - that is what I reference above re: a marker of inflammation but is present in human milk and can be present in the stool of breastfed babies.

Beneficial Bacteria - both Lactobacillus and E coli were undetectable. Bifidobacterium was a 4+. At the time I was giving her Kirkman's Bifido complex but I have since switched to Pro Bio Gold.

Other Bacteria present:
alpha haemolytic Streptococcus - 4+
gamma haemolytic Streptococcus - 4+
Morganella morganii - 4+
Haemolytic Escherichia coli - 4+
Klebsiella oxytoca - 4+

We did a 5 day course of Septra to kill off the bacteria.

And Mycology...
non Candida albicans Yeast 1+
Candida albicans 1+
Rhodotorula species 1+

so we're doing the 3 months of Nystatin for that.
 

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Did the septra get the bacteria in a follow up stool test?
When Andrew was 3.5 we had some nasty bacterial overgrowth. The first treatment failed (loose stools continued). I'm just wondering about follow up basically. I think one genova 3 day stool has something like a 60% parasite detection rate for blasto. Two three day collections is closer to 90% or so. Also, blasto is always at the end of the stool so where you collect (throughout and esp. end) matters. However, that much bacterial overgrowth alone is plenty to cause this stuff in my experience. I prefer metametrix to genova because they do DNA so it's not a matter of catching enough parasite for culture like genova. That's why Genova needs more samples. But you're right they do look broadly.
Looking for eosinophilic disorders would be a top consideration too if the GI didn't do that the first time. I don't think typical allergy testing is helpful for finding triggers for EOS.
 

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Discussion Starter · #10 ·
Quote:

Originally Posted by sbgrace View Post
Did the septra get the bacteria in a follow up stool test?
When Andrew was 3.5 we had some nasty bacterial overgrowth. The first treatment failed (loose stools continued). I'm just wondering about follow up basically. I think one genova 3 day stool has something like a 60% parasite detection rate for blasto. Two three day collections is closer to 90% or so. Also, blasto is always at the end of the stool so where you collect (throughout and esp. end) matters. However, that much bacterial overgrowth alone is plenty to cause this stuff in my experience. I prefer metametrix to genova because they do DNA so it's not a matter of catching enough parasite for culture like genova. That's why Genova needs more samples. But you're right they do look broadly.
Looking for eosinophilic disorders would be a top consideration too if the GI didn't do that the first time. I don't think typical allergy testing is helpful for finding triggers for EOS.
We haven't retested the stool. Maybe that's the next step. There's no mention of parasite testing on my results but it sounds like you have experience with Genova and know that they do cover it, so that's reassuring. I'll ask about the Matametrix test. If it's not too much more expensive maybe we'll try that.

We never did a scope. They recommended it at 7 months but that was before I even tried an ED beyond milk and soy and we were making progress with the ED route so I cancelled the scope. When we went back last summer he mentioned a scope again but then found the metabolic acidosis, which seemed like a possible explanation for many of her symptoms, so the idea of a scope got dropped. Is it possible to identify EOS with blood work or is it only diagnosed with a scope?
 

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Eos can only be dx'ed with a scope. Eosoniphils are in the GI tract in eos disorders (and they're not supposed to be).
 

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Quote:

Originally Posted by JacquelineR View Post
Eos can only be dx'ed with a scope. Eosoniphils are in the GI tract in eos disorders (and they're not supposed to be).
Very true. My dd's symptoms are, and some were: severe acid reflux, constipation some days, some days diahrea and mucusy stools, food allergies and some intolorances, microscopic hematuria, blood in stool as an infant, than again when she was 3 years old. Sleep problems, rashes, FTT at 6 months, but soon caught up due to comfort feeding. She still has some issues of course, and is on a EXTEMELY strict diet. The reflux is gone, the hematuria is getting better
Eosinophils can get in the bladder and kidneys btw. There are more symptoms, but those were the hallmarks, oh wait, unexplained severe stomach pain. I'm so happy we got the diagnosis that way we know how to treat it. She stills see's nephrology yearly, GI every 6 months, and allergy every 3. The positive is that we know exactly what we are fighting.
 

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I'm just skimming this thread really quickly because I need to go to bed, but your LO's stool test results look really similar to my DD's. She also had klebsiella oxytoca, one of the streps, no lacto, and really elevated inflammation markers- including lactoferring (I talked to the biochemist at Great Plains about the fact that lactoferrin & lysozyme are in breastmilk and DD is breastfed, and she admitted that it might affect the results, but not to the levels where my DD is at. Plus, DD had white blood cells and mucus which also definitively points to inflammation.)

We're doing a product with GSE in it rather than the abx for the bacterial overgrowth- I'm really hoping it works. The doc wanted us to retest in 4-6 weeks, but the Great Plains biochemist said there's no way we would see improvements that quickly- she recommended retesting in 6-12 months (which is kind of disappointing... I was hoping to see results quickly.)

Anyway... my thread with DD's results is called "Our test results" if you want to take a look and compare notes.

We're going to a GI next week as well, just to see if there's anything else we're missing. I'm trying to come at this from as many angles as I can since we just keep losing food after food....
 

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They didn't mention parasites at all? Hmmm...that doesnt' make sense to me. Genova parasites is a three day collection. Maybe it is it's own test? Did you collect multiple stools before you sent it?

I think she needs a scope too but I'd do the metametrix first if you can because if you find something I'd want to address that initially.
 

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Discussion Starter · #15 ·
Would you believe after all this time I still don't know how to quote from multiple posts at once? So I'm going to just respond and hope you all can follow my thoughts.

In thinking about it, I recalled that her stools were consistently good while we were giving the antibiotic. I remember being surprised, since we were expecting diarrhea as a side effect from the abx. So I'm now thinking the bacteria might be the primary issue going on, and that the abx didn't effectively get rid of it. If this is the case we could go the route of another abx or trying some of the natural agents that our report showed were effective, although no natural agent was as effective as the abx on these particular bacteria. I'm having a similar issue with my own digestion - I was great for a few months after treating the bacteria in my system but have been slipping backward recently. So I'm thinking about what other changes we might need to make to create a less welcoming environment for these bacteria and yeast to take hold.

Rachelle - I looked again and there really is no mention on parasites in my report. We did a 3 day sample though. I checked Genova's website and it sounds like the parasite testing is in a more recent or upgraded test (they call it Comprehensive Digestive Stool Analysis 2.0) so I'm guessing we didn't get that one. So if we aren't making progress with the antibacterial interventions it might be worth exploring the world of parasites.

EOS just doesn't sound like her. She's not been on of those kids that seems to react to everything. Her reflux has been under control for quite some time.

I called the GI office yesterday to just let them know how she's been and see what they think. The nurse essentially said none of her symptoms are concerning. Appparently a "pudding like" consistency of stool on a regular basis is good. Better than a formed stool requiring straining. Of course watery diarrhea, sometimes containing blood, is not good but since DD only has the watery stuff once a week or so and the blood is very rare she didn't sound too concerned. And it definitely doesn't meet their criteria for a colonoscopy.

As for the growth - it is impossible to know whether that is a problem or not. Poor growth is to be expected with DD due to her genetic condition. My gut tells me there is more going on with her growth than just her TS, but convincing doctors of this is almost impossible. If you take a kid with a genetic predisposition of poor growth in to a doctor and say "this kid isn't growing" their response is basically "What do you expect?" But as I said above, there are all these things that don't fit. We're a tall family so why is she at the bottom of the growth charts even for her condition? And her head is at about the 97th percentile on the regular charts. Does it make sense for a kid to have that big of a head with such a small body? If she were just genetically supposed to be little (like she got the recessive gene in our family) would her head be that big? IDK. Maybe I'm over-analyzing it.

So I'm trying to see if I need a reality check. I've been told by the allergist as well that I need to expand my definition of "normal" stools. Thoughts on this? Is mushy, unformed poop nearly all the time "normal"? I'm struggling to accept this.

ChangingSeasons, interesting that our DD's have similar stool analysis results. Thanks for the tip on your thread.
 

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Discussion Starter · #16 ·
The GI's nurse called me back Monday and said the GI wants to see DD again to "make sure we're not missing something". So I made an appointment for next Monday.

But now all week she's had great poops. I doubled her probiotic last week after the blood and I'm thinking maybe that's been the difference. So now I'm torn again. I really hate the thought of either 1) going in to the GI and having him discount all my concerns and treat me like a hysterical, obsessive mother who is doing more harm to my child than good by limiting all these foods (this was the basic attitude I got from him the last time) or 2) having him recommend lots of invasive testing when she's getting better without it, and then the stress of trying to decide whether I want to go along with his treatment plan.

On the other hand, she is nearly 2 1/2 and still gets blood in her poop from foods - a condition she was supposed to "outgrow" by 6, then 12, then 18 months. And she is very very small. And she still has diarrhea pretty often (if you don't count this week) despite being off all the foods we suspect. So maybe its worth it to hear his opinion on things.

Keep the appointment or cancel? WWYD?
 

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We just had our GI appt today, and it went shockingly well. I told him that I wasn't comfortable with scoping (he would normally recommend colonoscopy AND endoscopy), so he said we can do some less invasinve stuff- we're doing blood work (cbc and metabolic stuff), stool tests (parasites, c.diff, giardia, h.pylori,...?), and then a fructose intolerance test (hydrogen breath test- to check for bacterial overgrowth.) Have you guys already tried these things?
 

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Discussion Starter · #19 ·
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Originally Posted by changingseasons View Post
We just had our GI appt today, and it went shockingly well. I told him that I wasn't comfortable with scoping (he would normally recommend colonoscopy AND endoscopy), so he said we can do some less invasinve stuff- we're doing blood work (cbc and metabolic stuff), stool tests (parasites, c.diff, giardia, h.pylori,...?), and then a fructose intolerance test (hydrogen breath test- to check for bacterial overgrowth.) Have you guys already tried these things?
We did all of that except the fructose intolerance test at the last visit last summer.

Pat, my inclination was to put it off a week too. And then I thought of how many times I've thought we were on the right track only to backtrack again. So the thought I'm having right at this second is to look at the bigger picture and rather than going to him b/c she is currently having diarrhea, maybe I should just consider this a follow up because she isn't totally "healed" overall. IDK.
 
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