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One of the most debilitating and life-disrupting problems that my son experienced (it nearly destroyed us all) was encopresis. Without getting too personal here, suffice it to say I spent the last five or six years cleaning soiled underwear and pants. This is the first time life has been normal with respect to this issue. My boy is now 11. We have a very strange case. He hasn't been diagnosed yet, but no doubt will be FINALLY when we see either of the two well known experts in the field of PANDAS/PITAND.

 

My son had an intestinal infection with Clostridium difficile. All of the horrible ocd, vocal tics (echolalia, coprolalia), and motor tics resolved nearly overnight when he was given flagyl and vancomycin. He has been well for one year (except for the side issues that I have been talking about in this forum- odd, other behavior issues).

 

Has anyone had kids with this issue, I mean chronically rather than bouts here and there which may be normal for dif. age groups

(especially in boys)? This problem resolved with the antibiotic, just as the tics and ocd did. Very curious...

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One of the most debilitating and life-disrupting problems that my son experienced (it nearly destroyed us all) was encopresis. Without getting too personal here, suffice it to say I spent the last five or six years cleaning soiled underwear and pants. This is the first time life has been normal with respect to this issue. My boy is now 11. We have a very strange case. He hasn't been diagnosed yet, but no doubt will be FINALLY when we see either of the two well known experts in the field of PANDAS/PITAND.

 

My son had an intestinal infection with Clostridium difficile. All of the horrible ocd, vocal tics (echolalia, coprolalia), and motor tics resolved nearly overnight when he was given flagyl and vancomycin. He has been well for one year (except for the side issues that I have been talking about in this forum- odd, other behavior issues).

 

Has anyone had kids with this issue, I mean chronically rather than bouts here and there which may be normal for dif. age groups

(especially in boys)? This problem resolved with the antibiotic, just as the tics and ocd did. Very curious...

 

Not at my house but a friend of mine, her dd had bad encopresis. It resolved completely after a month of antibiotics. So glad you will be seeing one of the experts!

 

Susan

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Your post caught my eye b/c one of my son's big issues is with gastrointestinal bugs, too. I'll try to be brief, but I have a lot to say on this subject and I have a practitioner who may be better suited to helping you.

 

Both of my boys have PANDAS (ages 2 and 5) and both have on-going gastro issues which we are currently trying to treat. At one point they both had clostridia (no doubt form frequent use of antibiotics) and we treated that with Saccharomyces Boulardii and Culturelle (probiotics). Furthermore, they both have issues with yeast in the GI tract, also from antibiotic use. And lastly, my 5 year old developed a NASTY bacterial infection of the GI tract which made him completely psychotic/aggressive, worst than any PANDAS/strep infection. For this he was prescribed Vancomycin and we were back in the game within 5 days.

 

We were lucky enough to be seeing a DAN (Defeat Autism Now) doctor who is familiar with all of these gut issues and how to treat them. He also has 2 boys of his own that have PANDAS. Basically, he lives it and he treats it. He is part of a DAN group that is world-famous within the autism community. His name is Scott Smith, he is a P.A. in that group (the main doctor is Bradstreet). If you are interested, here is their website: www.icdrc.org. They are located in Melbourne, FL but they do telephone consults.

 

If your child struggles with gastro issues which create behavioral problems, I would highly recommend considering going to someone like a DAN doctor who will test for/treat these issues as well. Regular neurologists do not quite understand that some kids cannot tolerate the high doses of antibiotics that are required to treat PANDAS. And if the antibiotics themselves put the kid over the edge, they may just think that the PANDAS is getting worse and they need to up the antibiotic. The DAN doctors (at least in our clinic) do see kids who do not have an autism diagnosis, neither of my children have one, although they have both displayed autistic signs in the past. They are capable/willing to go as far as steroids and IVIG if need be. They closely follow Swedo's work, attend and lecture at some of the same conferences as she does, sits on medical advisory boards with her, etc.

 

Anyway, just my 2 cents!

Stephanie

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I forgot to mention (because I assume you already know) that the high-dose antibiotics that are the norm for treating PANDAS is what CAUSES these gastro problems, which in turn cause further issues in some kids (like I said my son became pshychotic, but he also displayed OCD from the bacteria). So upping the dose of regular antibiotics will only make the "gut bugs" WORSE (unless of course they are specifically using vanco or flagyl).

 

This leaves some kids with fewer options in terms of treating PANDAS, but then again there is always IVIG...

 

Stephanie

 

Your post caught my eye b/c one of my son's big issues is with gastrointestinal bugs, too. I'll try to be brief, but I have a lot to say on this subject and I have a practitioner who may be better suited to helping you.

 

Both of my boys have PANDAS (ages 2 and 5) and both have on-going gastro issues which we are currently trying to treat. At one point they both had clostridia (no doubt form frequent use of antibiotics) and we treated that with Saccharomyces Boulardii and Culturelle (probiotics). Furthermore, they both have issues with yeast in the GI tract, also from antibiotic use. And lastly, my 5 year old developed a NASTY bacterial infection of the GI tract which made him completely psychotic/aggressive, worst than any PANDAS/strep infection. For this he was prescribed Vancomycin and we were back in the game within 5 days.

 

We were lucky enough to be seeing a DAN (Defeat Autism Now) doctor who is familiar with all of these gut issues and how to treat them. He also has 2 boys of his own that have PANDAS. Basically, he lives it and he treats it. He is part of a DAN group that is world-famous within the autism community. His name is Scott Smith, he is a P.A. in that group (the main doctor is Bradstreet). If you are interested, here is their website: www.icdrc.org. They are located in Melbourne, FL but they do telephone consults.

 

If your child struggles with gastro issues which create behavioral problems, I would highly recommend considering going to someone like a DAN doctor who will test for/treat these issues as well. Regular neurologists do not quite understand that some kids cannot tolerate the high doses of antibiotics that are required to treat PANDAS. And if the antibiotics themselves put the kid over the edge, they may just think that the PANDAS is getting worse and they need to up the antibiotic. The DAN doctors (at least in our clinic) do see kids who do not have an autism diagnosis, neither of my children have one, although they have both displayed autistic signs in the past. They are capable/willing to go as far as steroids and IVIG if need be. They closely follow Swedo's work, attend and lecture at some of the same conferences as she does, sits on medical advisory boards with her, etc.

 

Anyway, just my 2 cents!

Stephanie

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One of the most debilitating and life-disrupting problems that my son experienced (it nearly destroyed us all) was encopresis. Without getting too personal here, suffice it to say I spent the last five or six years cleaning soiled underwear and pants. This is the first time life has been normal with respect to this issue. My boy is now 11. We have a very strange case. He hasn't been diagnosed yet, but no doubt will be FINALLY when we see either of the two well known experts in the field of PANDAS/PITAND.

 

My son had an intestinal infection with Clostridium difficile. All of the horrible ocd, vocal tics (echolalia, coprolalia), and motor tics resolved nearly overnight when he was given flagyl and vancomycin. He has been well for one year (except for the side issues that I have been talking about in this forum- odd, other behavior issues).

 

Has anyone had kids with this issue, I mean chronically rather than bouts here and there which may be normal for dif. age groups

(especially in boys)? This problem resolved with the antibiotic, just as the tics and ocd did. Very curious...

My daughter has had problems with both chronic constipation and encopresis since the age of 2 (she'll be eight in July). We've been seeing a GI doc since the first signs but have always been told that it was just behavioral and we needed to "repotty" train her. Baloney! Last year after she was dx'd with both Pandas and an immune deficiency I made another appt with the GI Doc determined to have further testing done. The GI finally agreed to do an Endoscope and Colonoscopy and they found that she has eosinophilic cells in all her GI tract including her esophagus. These are allergy cells. So far we have found that she is allergic to 11 foods but she goes in again on Thursday for another Endo & Colon to see if anymore cells remain. Her constipation has improved greatly but is not completely gone.

 

I have noticed a pattern in the last eight months with the encopresis-whenever she picks up another infection of any kind the encopresis returns. Once we start her on a treatment round of abx the encopresis disappears immediately.

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Very interesting. Thanks for this info. My son also had eosinophils, some signs of reflux. He had colonoscopy and endoscopy. He had mild food allergy positives, however, we were told that this was due just to the fact that he had general allergies across the board. They weren't true food allergies. The encopresis and leakage cleared up while on the antibiotics for the Clostridium difficile colonization, without changing his diet. It's just all so confusing...

 

 

 

 

 

My daughter has had problems with both chronic constipation and encopresis since the age of 2 (she'll be eight in July). We've been seeing a GI doc since the first signs but have always been told that it was just behavioral and we needed to "repotty" train her. Baloney! Last year after she was dx'd with both Pandas and an immune deficiency I made another appt with the GI Doc determined to have further testing done. The GI finally agreed to do an Endoscope and Colonoscopy and they found that she has eosinophilic cells in all her GI tract including her esophagus. These are allergy cells. So far we have found that she is allergic to 11 foods but she goes in again on Thursday for another Endo & Colon to see if anymore cells remain. Her constipation has improved greatly but is not completely gone.

 

I have noticed a pattern in the last eight months with the encopresis-whenever she picks up another infection of any kind the encopresis returns. Once we start her on a treatment round of abx the encopresis disappears immediately.

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Very interesting. Thanks for this info. My son also had eosinophils, some signs of reflux. He had colonoscopy and endoscopy. He had mild food allergy positives, however, we were told that this was due just to the fact that he had general allergies across the board. They weren't true food allergies. The encopresis and leakage cleared up while on the antibiotics for the Clostridium difficile colonization, without changing his diet. It's just all so confusing...

 

??????? Did the positive food allergies show up through skin testing? Not true food allergies?? Sorry, doesn't quite seem right to me. The eosinophils and reflux can be signs of a disease called Eosinophilic Gasteritis. The website www.apfed.org can explain it better than I can.

 

My daughter has changes in mood when she eats the allergen foods.....

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My son had eosinophils only in small section. He was screened for eosinophilic esophagitis, but ruled negative based on further work. Everything was so mild. He had pseudomembranous colitis due to Clostridium difficile colonization.

 

 

Very interesting. Thanks for this info. My son also had eosinophils, some signs of reflux. He had colonoscopy and endoscopy. He had mild food allergy positives, however, we were told that this was due just to the fact that he had general allergies across the board. They weren't true food allergies. The encopresis and leakage cleared up while on the antibiotics for the Clostridium difficile colonization, without changing his diet. It's just all so confusing...

 

??????? Did the positive food allergies show up through skin testing? Not true food allergies?? Sorry, doesn't quite seem right to me. The eosinophils and reflux can be signs of a disease called Eosinophilic Gasteritis. The website www.apfed.org can explain it better than I can.

 

My daughter has changes in mood when she eats the allergen foods.....

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One of the most debilitating and life-disrupting problems that my son experienced (it nearly destroyed us all) was encopresis. Without getting too personal here, suffice it to say I spent the last five or six years cleaning soiled underwear and pants. This is the first time life has been normal with respect to this issue. My boy is now 11. We have a very strange case. He hasn't been diagnosed yet, but no doubt will be FINALLY when we see either of the two well known experts in the field of PANDAS/PITAND.

 

My son had an intestinal infection with Clostridium difficile. All of the horrible ocd, vocal tics (echolalia, coprolalia), and motor tics resolved nearly overnight when he was given flagyl and vancomycin. He has been well for one year (except for the side issues that I have been talking about in this forum- odd, other behavior issues).

 

Has anyone had kids with this issue, I mean chronically rather than bouts here and there which may be normal for dif. age groups

(especially in boys)? This problem resolved with the antibiotic, just as the tics and ocd did. Very curious...

 

 

Boy howdy do I know where you are coming from. My younger son, the one that up until recently I didn't think had any PANDAS symptoms has struggled with this since he was 2 as well. He's 7. Until I realized it was a medical condition I was losing my mind! I was so sick of cleaning underwear! It was really hard on our relationship until I read something and realized that he truly couldn't help it. I still hate it, but I can deal a little better with it now.

 

I finally started giving him glycerin suppositories every other day if he hasn't gone on his own to keep things moving and to make sure he wasn't having accidents at school. Prior to finally trying the suppositories we were doing the Mirlilax/fiber routine doctors prescribe. It just didn't work for us. The suppositories are also nice because it gives us some control. If we are headed out for a long day, or he is going to a friend's we make sure he goes before so there aren't any accidents. Since he is getting bigger, I guess he'll have to start doing it on his own soon. It works for us, but I keep wondering if we are making it so the true problem isn't addressed. He's got to learn to go on his own at some point!

 

Lately I've been wondering if he has PANDAS as well but is displaying it differently. He is VERY different from his brother. They are like night and day. He is totally asymptomatic when he gets strep. Prior to my older son's last exacerbation in February, my younger son was going on his own just about every other day. Then he stopped and started having accidents again as well as wetting the bed again. He had gone well over a month without having a nighttime accident. Now he's wetting the bed almost every night. It is so frustrating because he can go for a decent length of time with no accidents, and then we are right back to square one again overnight. He's also always had rashes on his bottom that I always thought came from the accidents. He also goes through phases where he doesn't want to play away from home and is really sensitive and cries a lot. Normally he's really easy going and tough, though he has always been a homebody. What has really made me start to wonder is that he is counting all the time. He also has favorite numbers and will do things that amount of times. And just recently he's been refusing to share water bottles or eat other people's food because of the germ issue. I've been telling myself the number thing is because he's in first grade and really beginning to understand math and the germ thing is because his teacher is constantly telling them how dirty and germy things are. But now I wonder. He had a throat swab not too long ago that was normal though.

 

My doctor already thinks I may be too stuck on the PANDAS thing for my older boy, I don't see how I would ever get him on board with the younger. Maybe I will start with an allergist. I know he has seasonal allergies, but I've always wondered if milk didn't play into the encopresis somehow. He had reflux really bad as a baby as well and has always struggled with constipation. He loves milk. Both boys do and every time I talk about seeing if we feel better without it they are totally against it. If I had a doctor that could tell us they were having issues with milk, it would certainly help.

 

I don't know anything about clostridium difficile. Is it common? How do they get it? What are some other symptoms?

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simplygina - sorry, just scanned this thread before rushing out the door, so apologies if I missed something but have you had your younger son's bottom swabbed ever?

 

just wondering if those rashes could be strep...

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simplygina - sorry, just scanned this thread before rushing out the door, so apologies if I missed something but have you had your younger son's bottom swabbed ever?

 

just wondering if those rashes could be strep...

 

I haven't. I just assumed they were from soiled underwear or wetting his pants. I guess the next time I see one I will definitely have it checked.

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Simplygina.. also wondered if you have had the cunningham tests done. A study out of Oklahoma University Health Sciences Center that looks at CaMk II activiation and anti neuronal antibodies that previous research has indicated may be indicative of PANDAS. It costs $400 but I think you could do 2 kids at the same time for that as it is towards post and packing costs. It isn't a definitive test as still in study stage but may help you decide re your younger child and may give you some ammo for your doctor.....

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Simplygina.. also wondered if you have had the cunningham tests done. A study out of Oklahoma University Health Sciences Center that looks at CaMk II activiation and anti neuronal antibodies that previous research has indicated may be indicative of PANDAS. It costs $400 but I think you could do 2 kids at the same time for that as it is towards post and packing costs. It isn't a definitive test as still in study stage but may help you decide re your younger child and may give you some ammo for your doctor.....

 

I have the kit for the Cunningham test, we just haven't had the funds to do it yet. I guess testing them both would make sense, then I would know if I'm really seeing things with him or if I'm so paranoid I'm imagining them. I will email them again tomorrow to see if I could get a reduction in price if I do them both at the same time. Certainly doesn't hurt to ask!

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I forgot to mention (because I assume you already know) that the high-dose antibiotics that are the norm for treating PANDAS is what CAUSES these gastro problems, which in turn cause further issues in some kids (like I said my son became pshychotic, but he also displayed OCD from the bacteria). So upping the dose of regular antibiotics will only make the "gut bugs" WORSE (unless of course they are specifically using vanco or flagyl).

 

 

Stephanie:

 

Can I ask how you/the docs figured out that your son's aggression/psychotic behavior was caused by the antibiotics?

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I don't know anything about clostridium difficile. Is it common? How do they get it? What are some other symptoms?

 

omg... you have lived the nightmare too. How horrible. Nobody else can really understand the darkness in this place. I feel it has destroyed the relationship with my son, not believing that he couldn't help it.

 

Clostridium difficile is not common. It is an extremely dangerous bacterium in elderly, immunocompromised, and others who cannot fend it off. It is THE hospital killer. Many patients who go in for some benign surgery never leave due to catching C. diff. In children, the colonization often goes unnoticed, and children often present with constipation rather than the signature diarrhea of C. diff. This is the case in chronic cases, which my son is/was. He is a relapsing case and a candidate for IVIg solely for this reason. We estimate that he had chronic colonization from about age 4 or 5, and he's now 11! I suspected C. diff. for a number of reasons (some medical microbiology background) and begged his doc to send in stool for culture. He kept telling me that my son would be deathly ill if he had C. diff., and in the hospital, not to worry. Time passed. He had three exacerbations starting at age 5 (motor tics, vocal tics, echolalia, coprolalia, exorcist syndrome, even autistic signs), with his last being last year, from Jan. 1 to end of March. In desperation, I turned my kitchen into a laboratory, making microscope slides of my son's stool. I found a slide that had some bacterial cells that looked like they maybe contained an endospore (a feature of this genus of bacteria), and called the pediatrician screaming in his ear that my son had C. diff. He humored me and agreed to send the sample in. It was positive. At this point my son was house bound, screaming the F word all over the place, and with motor tics. He was home from school obviously. Within 24 hours of being on Flagyl (what they always start C. diff. patients on due to the fact that it is about 1000 times cheaper) his symptoms came down. After one week he was doing great, and back to school after two weeks with no signs of anything. We did have to switch him from Flagyl to Vancocin (vancomycin) as some signs of both issues came back after the 14 day course of Flagyl. On vancomycin he made further gains. He had picked all of his eyebrows and eyelashes out over the previous couple years- an OCD that went undiagnosed; we thought it was stress. He has been relatively normal for one year now. He still has some ODD. We have consulted with Dr. T. who has ordered about 15 tests. He believes that my son fits one of the other categories such as PITAND since my son only had a known Strep infection at age 2 and had normal results last year for ASO/DNASE b/antineuronal antibody, etc. Chronic use of antibiotics over years (or even one time in a person with faulty immune system and a g.i. tract with a lack of bacterial diversity) can set a person up for C. diff. colonization. We all have a few cells in us now and again, but these are kept in check by our beneficial gut flora. But according to CDC, as much as 50% of newborns are colonized at birth with C. diff. from hospital nurseries. Our hospital nursery did have a C. diff. outbreak record at some point, but having hard time getting data. He just never cleared it. This may not be the only issue with him, as Dr. T. mentioned. Will know after tests.

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