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Posted

Hi Wilma,

 

My son had this, and was probable that he had untreated infection for many years. He ended up having Clostridium difficile colitis. His symptoms were pain in the lower abdomen, constipation, leakage of stool due to constipation, and on/off low grade fever probably. I must say, (and squeamish people, stop reading here), that the most horrible symptom was the smell that permeated everything he wore. At times, the whole house smelled of horse manure. The smell is unmistakable.

 

I cannot be sure that his psychiatric symptoms were related to his long infection. None of the physicians we have worked with have felt that Clostridium difficile can trigger neuropsychiatric symptoms. I have been told a flat out, "no." The same docs have told me that in addition to Strep, Mycoplasma pneumoniae is the other pathogen capable, and scientifically documented, to trigger neuropsych symptoms. So, I just don't know if any of your child's symptoms (I have followed, and yes, they are severe) can be attributed to C. diff. infection.

 

Is this what you are wondering? Do you have reason to think your daughter has C. diff. colonization??

 

Feel free to pm me... or you can e-mail me at: marykatmit@gmail.com

 

 

Posted

My oldest had "c. difficile" when she was 2 (not my pandas kid).....don't know if its the dame as clostridia, but she had mucousy, stools with blood up to 20 times a day. Horrible cramping every time she ate. My ped. was not interested---just give her fluids. IT wasn't until my neighbor (an RN) was at my house when I was changing a pullup and got wind of the SMELL!!! It is DISTINCT. Period. NOT like manure to me. Manure would be delightful in comparison.

Posted

Yes, the smell is horrible! It will make your eyes water! We've been battling c. diff for over 2yrs with my 3 yr old dd. We're finally getting it under control with long term daily doses of vancomycin. Oral vanco is non-systemic so it's safe to use for longer periods than flagyl. We've done several rounds of flagyl, culturrelle, hyperbaric oxygen therapy, herbs.......it always comes back.

 

For my dd, irritability is through the roof. She also runs in circles, gets a huge bloated belly, sensory issues like needing deep pressure on her head, self injury, night waking.

 

They've done studies of rats infected with clostridia and one of the first symptoms is that the rats start running circles......weird.

 

-Amber

Posted

Absolutely. Chronic colonization leads to constipation and encopresis. The usual presentation in acute illness is diarrhea with fever and vomiting. I finally had to show his doc at the time the literature indicating that many cases presented in an atypical way. Some of those cases involved death before diagnosis. Not trying to scare anyone. It took ME making wet mount slides of stool sample from my son, seeing suspicious cells, then taking a bag of stool into doc's office and saying I wasn't leaving "until I see that go out with the next labs." Of course, his sample came back positive for Clostridium difficile.

 

 

Posted

Johnsmom,

 

Clostridia is the plural, meaning various species of the genus Clostridium. Could be Clostridium difficile, Clostridium botulinum, etc. So, it is not accurate to say "Clostridia" as we have no idea which is meant. What we are talking about usually in this forum is Clostridium difficile, which is the pathogenic, opportunistic bacerium associated with overuse of broad spectrum antibiotic drugs.

 

 

Posted

Amber, the bloated belly is a dead giveaway. I wonder about this in autism. Many of the autistic children I have known have a very distended belly. My son had this belly. It came on overnight.... and so did the ocd and stuff... I don't know what the connection, but I think it was due to the antibiotics my son was on to clear the infection in his sinuses and lungs. He was also given prednisone, which was a double whammy, knocking down his immune defenses.

 

 

Posted

clostridia species (we don't know which one in either child) cause bad psychiatric symptoms in my boys, especially my 6yo: echolalia (repeating words that he hears others speak), repetitive speech, loss of ability to socialize normally, much less eye contact, anger/irritability (when the infection is more advanced, ragey behavior), stimmy behavior, and yes the poop that smells so bad that I literally run from the bathroom gagging (and it's green). Although my boys don't always get the green color and my 6yo doesn't always get the smell. they are helped with vanco, flagyl, culturelle.

Posted

Stephanie,

 

How do you know the psychiatric symptoms are from the Clostridium? How do you differentiate b/w that and just the same old PANDAS symptoms? My son had/has echolalia and the rest of what you listed, but he was also coming out of a strep infection and pneumonia? Just curious how you know.

 

 

Posted (edited)

Stephanie,

 

How do you know the psychiatric symptoms are from the Clostridium? How do you differentiate b/w that and just the same old PANDAS symptoms? My son had/has echolalia and the rest of what you listed, but he was also coming out of a strep infection and pneumonia? Just curious how you know.

 

It has taken two years of biomed treatments with two boys to get to a point where I can tell which infection causes which symptoms. Initially I had to have this backed up with labs (still do sometimes), but now I can spot the infection on my own, start treatment and within 24 hours we are back on track. Each of these infections do have an overlap of symptoms, but I have found that each one also has very distinct symptoms/behaviors. Klebsiella's distinction is the sensory-seeking behaviors - my 6yo's hands have to be on someone at all times. If we try to restrict him and if the infection is more advanced he will go into a very long and violent rage that is absolutely psychotic, meaning he has no idea what and why he is beating someone up (kicking biting hitting scratching "I hate you", etc.). Clostridia's distinction is the "autism" features and the green smelly poop (like I said not always, though, so I can't always go by that). With strep I have found that the distinguishing features are fears, separation anxiety, meltdowns (not ragey, more just wilting to the floor crying like the world is coming to an end) and he has a few distinct tics that come back whenever he gets strep. And then of course there is yeast which most of the time causes the silly, drunk behaviors, the trouble sleeping, the wanting to "stimulate" himself, the chronic need for snacks/carbs.

 

Like I said, some behaviors overlap. I had to start an elaborate spreadsheet with a list of symptoms that I would check off each day and compare all this to lab reports, etc. And it is only fair to mention that I have had expert guidance along the way with a biomed practitioner who specializes in pandas and has 2 boys with all the same issues as mine.

 

I do not have my 2yo "nailed down" so expertly, unfortunately. I think b/c he is so speech-delayed and his gut infections do not cause quite the severity of behavioral symptoms is why I don't have him figured out yet. But I will say that with him, pandas has a certain "feel". He gets quite an anxious look on his face, will fixate on an object/activity for literally 8-12 hours per day, some separation anxiety, some fears/hallucinations at it's worst, and what I call the chronic fussies. With clostridia he is more content most of the day, but he will think nothing of hitting people!! Oh, and the poop that sends me running and gagging for sure!

Edited by Stephanie2
Posted

Bloated bellies are the pits. For Audrey, there are several things going on. Yeast causes major bloating. Food intolerances. And for Audrey, managing her constipation has been key. We had an abdominal x-ray taken about 6 months ago and she was completely full of stool. It was insane! THe antibiotics and antifungals have actually brought the bloat down for Audrey but it's weird, she starts the day with a flat stomach and by the afternoon, it's completely bloated and hard. Audrey has major gut issues though. We've been fighting acid reflux, chronic yeast, clostridia, and numerous food intolerances for the past 2yrs.

 

I think a large group of kids on the spectrum have gut pathogens. Almost everyone I've met in the biomed world has complained about fighting some kind of gut beast. It blows me away when I go to Audrey's preschool and the anti-biomed parents tell me their kids have absolutely no problems in that department. I just find it really hard to believe. I am a little envious though. :)

-Amber

 

Amber, the bloated belly is a dead giveaway. I wonder about this in autism. Many of the autistic children I have known have a very distended belly. My son had this belly. It came on overnight.... and so did the ocd and stuff... I don't know what the connection, but I think it was due to the antibiotics my son was on to clear the infection in his sinuses and lungs. He was also given prednisone, which was a double whammy, knocking down his immune defenses.

Posted

Bloated bellies are the pits. For Audrey, there are several things going on. Yeast causes major bloating. Food intolerances. And for Audrey, managing her constipation has been key. We had an abdominal x-ray taken about 6 months ago and she was completely full of stool. It was insane! THe antibiotics and antifungals have actually brought the bloat down for Audrey but it's weird, she starts the day with a flat stomach and by the afternoon, it's completely bloated and hard. Audrey has major gut issues though. We've been fighting acid reflux, chronic yeast, clostridia, and numerous food intolerances for the past 2yrs.

 

I think a large group of kids on the spectrum have gut pathogens. Almost everyone I've met in the biomed world has complained about fighting some kind of gut beast. It blows me away when I go to Audrey's preschool and the anti-biomed parents tell me their kids have absolutely no problems in that department. I just find it really hard to believe. I am a little envious though. :)

-Amber

 

Amber, the bloated belly is a dead giveaway. I wonder about this in autism. Many of the autistic children I have known have a very distended belly. My son had this belly. It came on overnight.... and so did the ocd and stuff... I don't know what the connection, but I think it was due to the antibiotics my son was on to clear the infection in his sinuses and lungs. He was also given prednisone, which was a double whammy, knocking down his immune defenses.

 

See, this is what I am talking about - I still don't have my 2yo figured out in terms of symptoms of infections. Amber, everything you list here is what is going on currently with my 2yo (a couple days after steriods): bloated belly, running in circles, standing on head. no self-injury, but he did hit my husband this morning which I do know is classic clostridia in him. You are making me think, here. I wonder if I need do do an OAT and do a round of vanco. Or maybe I should just throw him on some biocidin and see what I can do, but that is full of oxalates from what I hear, which I was told my our biomed doc that oxalates are contributing to the belly. Also, he just got back some labs that show high IGg. Maybe I need to run IGg food allergies. I'm really brainstorming/rambling here. Sometimes I get so confused with my 2 boys I don't know which way is up!!!!

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