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Abrupt OCD following Crohn's disease flare-up


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yes, my son has Crohn's along with Tourette Syndrome (3rd generation genetic TS ....that we know of, likely more tho)

 

he is not experiencing flares anymore tho since implementing dietary modifications and adding specific supplements to the others that he is already on for his TS/OCD. He takes natural antimicrobials and probiotics

His Crohn's symptoms were very intense some years back.

 

he tested negative on all strep evaluations done by dr Murphy in 2000/2001

He is now 20yo

 

he tested +ve to Epstein Barr but has not been tested for mycoplasma yet (his choice,)

 

There are a number of GI physicians who feel there is a mycoplasma connection to Crohn's tho some have given me the "quackery" comments when I have mentioned it. :( Wouldnt surprise me at all

 

My son's Tourettic OCD used to be the worst of his symptoms but has been almost negligible for a number of years now. Tics are pretty mild too.

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I have Crohn's disease, 1st diagnosed in 1990 @ Mayo Clinic. Mild to moderate: I haven't been on meds for years, and have just chosen to manage the disease with diet, exercise, and lifestyle changes.

 

I've felt (guiltily) that my autoimmune history probably made our PANDAS son vulnerable to the GABHS reaction. My wife has some history of MS on her side as well.

 

FYI, Dr. T: at one point, Diana P was gathering case histories for Dr. Leckman from a group of families in her "PANDAS network." She found that 19 of 22 reported a history of autoimmune disorders.

 

Probably doesn't surprise you, eh?

 

 

Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

 

http://psy.psychiatryonline.org/cgi/reprint/50/4/425

 

Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

 

Dr. T

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Dr. T, I saw this case when it was first published last year, and that's part of what got me thinking about infliximab and adalimumab (and other biologics). When the infliximab stopped working for this child's Crohn's, probably because of antibody development (our nemesis with these biologics), his OCD flared as well. When he switched to adalumumab, both the Crohn's and the OCD remitted quickly. It says in the article "the stress of diminished response to infliximab may have triggered the OCD." I feel that it's equally possible, if not more so, that the diminished efficacy of infliximab itself was responsible for the flare of OCD. In other words, the infliximab, probably due to antibodies that his body had created to it, came to fail in suppression of TNF-alpha, leading, down different pathways, to both a flare of OCD and a flare of Crohn's. Switching meds to one that effectively suppressed TNF-alpha again for this child resolved both conditions.

 

There is a bunch of research out there that shows a similar effect in other conditions, e.g. psoriasis, RA. When these patients go on biologic medications that inhibit inflammatory cytokines (either those directed at TNF-alpha or IL-1), their psychiatric conditions often improve quite dramatically.

 

 

Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

 

http://psy.psychiatryonline.org/cgi/reprint/50/4/425

 

Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

 

Dr. T

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Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

 

http://psy.psychiatryonline.org/cgi/reprint/50/4/425

 

Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

 

Dr. T

 

Dr. T,

 

During his middle school exacerbation, Gat failed to have a solid BM for over a year. It coincided precisely with his PANDAS (or, in retrospect, likely PITAND) episode. He was never diagnosed as Crohn's, the DAN! doc attributed it to leaky gut, yeast and inflammation. As he healed, emotionally, his gut healed right along with him. During his 18 month reprieve before this exacerbation, he had no gut or bowel issues at all. The beginning of our current exacerbation brought about the same gut and bowel issues again though they, like everything else, have stabilized in the past couple weeks. We have MS, trigeminal neuralgia and vocal tics in the family tree (maternal grandfather for TN & tics and his brother had MS). We can definitely link Gat's bowel issues to PANDAS/PITAND episodes.

 

Gayle

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I had exactly the same issue during my teen episodes. Also during that drug-induced lupus episode I had in my 20's. But nothing abnormal in between, before, or after all of that.

 

 

Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

 

http://psy.psychiatryonline.org/cgi/reprint/50/4/425

 

Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

 

Dr. T

 

Dr. T,

 

During his middle school exacerbation, Gat failed to have a solid BM for over a year. It coincided precisely with his PANDAS (or, in retrospect, likely PITAND) episode. He was never diagnosed as Crohn's, the DAN! doc attributed it to leaky gut, yeast and inflammation. As he healed, emotionally, his gut healed right along with him. During his 18 month reprieve before this exacerbation, he had no gut or bowel issues at all. The beginning of our current exacerbation brought about the same gut and bowel issues again though they, like everything else, have stabilized in the past couple weeks. We have MS, trigeminal neuralgia and vocal tics in the family tree (maternal grandfather for TN & tics and his brother had MS). We can definitely link Gat's bowel issues to PANDAS/PITAND episodes.

 

Gayle

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Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

 

http://psy.psychiatryonline.org/cgi/reprint/50/4/425

 

Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

 

Dr. T

 

Can't Lyme be a facilitator for Chrohn's? I know it can certainly cause problems in the gut.

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just wanted to add here that my son and I have gone back over the log we keep of flares (we have kept this for a number of years so as to identify triggers for tics, OCD and Crohn's) and we do not find thet he has had any significant correlation of waxing of OCD when in Crohn's flare.

 

His OCD waxing seems to have always closely followed tic waxing. His OCD was classifed "tourettic" by his physician (a form of OCD that seems unique to people with genetic TS where tics and OCD symptoms can "morph" into each other) so not sure if that is that has any bearing. We do not see an apparent significant increase in tics on the log related to Crohn's flares either. Stress/exhaustion seems to be the #1 trigger for his past Crohn's flares, followed closely by eating triggering foods, and altho yes, stress is a tic trigger for him, it ranks lower on the list of his triggers than eg chemical exposure, food additives etc

 

re family autoimmune disorders, I am only aware of husband's mom having rheumatoid arthritis and an aunt of mine who had lupus. Neither hubby or I have autoimmune illness that we are aware of, and my oldest son (23yo) does not have TS or Crohn's or any known autoimmune illness

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We have an interesting story. I am posting here in reply to your comment about inflam. bowel disease just because this is our most recent experience. I will outline in order to shorten this:

 

-boy, now age 11

-history of early uri's, starting age 3 months with that being first antibiotic therapy

-severe ear infections, pharyngitis, tonsillitis

-confirmed strep throat at age 2

-dx of Coats' Disease at age 3, with loss of vision in 1 eye following two surgical procedures

-from age 2 onward, behavior changes

-first noticed repeating of words about age 3

-age 5 first motor tic episode, head to toe, extremely violent torso stretching, trunk twisting, with symptoms resolving in weeks.

-1 year long battle with severe tonsillitis, pharyngitis, now starts bowel problems (encopresis)

 

-at age 6, one year later, sudden onset head to toe motor tics, followed by first vocal tics within two weeks of motor tics

-tics lasted from April until July, when he was treated with nystatin and yeast elimination diet- symptoms resolved between July and August.

-encopresis, night terrors, sleep disturbances, anxiety, phobias, social probs persist

-trichotillomania persists for duration

-no sign of tics other than eyelash pulling until 2009

 

-2009, December, motor tics and vocal tics appear suddenly overnight, including severe coprolalia, echolalia, signs of autism (no eye contact, inability to follow a command)

-severe bowel problems

-is withdrawn from school since tics render him nonfunctional

-stool sample tests positive for Clostridium difficile, immediately placed on Flagyl, then Vancomycin

-within 24 hours, tics diminish, and continue to do so until all are gone within two weeks.

-tics that exploded in late December are gone by February or early March.

-symptom free for one year now

???????????????????????????????????????????????????????????????????????????

PANDAS?

C. diff?

Mycoplasma?

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We have an interesting story. I am posting here in reply to your comment about inflam. bowel disease just because this is our most recent experience. I will outline in order to shorten this:

 

-boy, now age 11

-history of early uri's, starting age 3 months with that being first antibiotic therapy

-severe ear infections, pharyngitis, tonsillitis

-confirmed strep throat at age 2

-dx of Coats' Disease at age 3, with loss of vision in 1 eye following two surgical procedures

-from age 2 onward, behavior changes

-first noticed repeating of words about age 3

-age 5 first motor tic episode, head to toe, extremely violent torso stretching, trunk twisting, with symptoms resolving in weeks.

-1 year long battle with severe tonsillitis, pharyngitis, now starts bowel problems (encopresis)

 

-at age 6, one year later, sudden onset head to toe motor tics, followed by first vocal tics within two weeks of motor tics

-tics lasted from April until July, when he was treated with nystatin and yeast elimination diet- symptoms resolved between July and August.

-encopresis, night terrors, sleep disturbances, anxiety, phobias, social probs persist

-trichotillomania persists for duration

-no sign of tics other than eyelash pulling until 2009

 

-2009, December, motor tics and vocal tics appear suddenly overnight, including severe coprolalia, echolalia, signs of autism (no eye contact, inability to follow a command)

-severe bowel problems

-is withdrawn from school since tics render him nonfunctional

-stool sample tests positive for Clostridium difficile, immediately placed on Flagyl, then Vancomycin

-within 24 hours, tics diminish, and continue to do so until all are gone within two weeks.

-tics that exploded in late December are gone by February or early March.

-symptom free for one year now

???????????????????????????????????????????????????????????????????????????

PANDAS?

C. diff?

Mycoplasma?

 

Wow. Has to at least have you thinking about Chemar's quote by Pasteur that indicates its less about the microbe and more about the terrain. I have said for 4 years that 99% of what I do for my son is in an effort to "level the playing field" so that his body can right itself.

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We have an interesting story. I am posting here in reply to your comment about inflam. bowel disease just because this is our most recent experience. I will outline in order to shorten this:

 

-boy, now age 11

-history of early uri's, starting age 3 months with that being first antibiotic therapy

-severe ear infections, pharyngitis, tonsillitis

-confirmed strep throat at age 2

-dx of Coats' Disease at age 3, with loss of vision in 1 eye following two surgical procedures

-from age 2 onward, behavior changes

-first noticed repeating of words about age 3

-age 5 first motor tic episode, head to toe, extremely violent torso stretching, trunk twisting, with symptoms resolving in weeks.

-1 year long battle with severe tonsillitis, pharyngitis, now starts bowel problems (encopresis)

 

-at age 6, one year later, sudden onset head to toe motor tics, followed by first vocal tics within two weeks of motor tics

-tics lasted from April until July, when he was treated with nystatin and yeast elimination diet- symptoms resolved between July and August.

-encopresis, night terrors, sleep disturbances, anxiety, phobias, social probs persist

-trichotillomania persists for duration

-no sign of tics other than eyelash pulling until 2009

 

-2009, December, motor tics and vocal tics appear suddenly overnight, including severe coprolalia, echolalia, signs of autism (no eye contact, inability to follow a command)

-severe bowel problems

-is withdrawn from school since tics render him nonfunctional

-stool sample tests positive for Clostridium difficile, immediately placed on Flagyl, then Vancomycin

-within 24 hours, tics diminish, and continue to do so until all are gone within two weeks.

-tics that exploded in late December are gone by February or early March.

-symptom free for one year now

???????????????????????????????????????????????????????????????????????????

PANDAS?

C. diff?

Mycoplasma?

 

Thank you for posting...just keeps affirming my journey when the medical docs keep making me doubt myself..and told me no correlation between my sons tics and his strep....and being this last year we have not had any result with diet.(was starting to doubt his sudden onset and the illness the day before onset as a correlation)..and now we are on myco p journey!!!!

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We have an interesting story. I am posting here in reply to your comment about inflam. bowel disease just because this is our most recent experience. I will outline in order to shorten this:

 

-boy, now age 11

-history of early uri's, starting age 3 months with that being first antibiotic therapy

-severe ear infections, pharyngitis, tonsillitis

-confirmed strep throat at age 2

-dx of Coats' Disease at age 3, with loss of vision in 1 eye following two surgical procedures

-from age 2 onward, behavior changes

-first noticed repeating of words about age 3

-age 5 first motor tic episode, head to toe, extremely violent torso stretching, trunk twisting, with symptoms resolving in weeks.

-1 year long battle with severe tonsillitis, pharyngitis, now starts bowel problems (encopresis)

 

-at age 6, one year later, sudden onset head to toe motor tics, followed by first vocal tics within two weeks of motor tics

-tics lasted from April until July, when he was treated with nystatin and yeast elimination diet- symptoms resolved between July and August.

-encopresis, night terrors, sleep disturbances, anxiety, phobias, social probs persist

-trichotillomania persists for duration

-no sign of tics other than eyelash pulling until 2009

 

-2009, December, motor tics and vocal tics appear suddenly overnight, including severe coprolalia, echolalia, signs of autism (no eye contact, inability to follow a command)

-severe bowel problems

-is withdrawn from school since tics render him nonfunctional

-stool sample tests positive for Clostridium difficile, immediately placed on Flagyl, then Vancomycin

-within 24 hours, tics diminish, and continue to do so until all are gone within two weeks.

-tics that exploded in late December are gone by February or early March.

-symptom free for one year now

???????????????????????????????????????????????????????????????????????????

PANDAS?

C. diff?

Mycoplasma?

 

Clostridium difficile is flagellated, and low-level persistent C.Diff infection could manifest as anti-flagellin antibodies. What a disaster if that is the case, we are seeing anti-flagellin antibodies in all kids with a PANDAS-like picture. Many of these children are on chronic antibiotics - what to do then? .

 

One possible loophole though - the C.Diff flagellum has a molecular weight of 39 (not 41) kilodaltons and should be distinguishable from p41 on a good-quality Western blot.

 

Dr. T

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So, all children who appear to be PANDAS are tested for anti-flagellin antibodies?

 

This was my hypothesis prior to looking at PANDAS more. Since my child has had a screwed up g.i. system as long as he has had TS symptoms, I believed that we found the problem when he got a pos C. diff. result, and cleared up immediately with vancomycin. Since my child was treated about 4 times per year for upper respiratory infection since the age of 3 months, he would have been a prime candidate for Clostridium difficile colonization.

 

 

 

 

Clostridium difficile is flagellated, and low-level persistent C.Diff infection could manifest as anti-flagellin antibodies. What a disaster if that is the case, we are seeing anti-flagellin antibodies in all kids with a PANDAS-like picture. Many of these children are on chronic antibiotics - what to do then? .

 

One possible loophole though - the C.Diff flagellum has a molecular weight of 39 (not 41) kilodaltons and should be distinguishable from p41 on a good-quality Western blot.

 

Dr. T

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