GASTROINTESTINAL PROBLEMS

[kim]

phasmid,

 

Since you mentioned that your son suffered from trich, I found this quite remarkable in light of the "acetylcysteine for trich" study.

 

Your post was fascinating. I have joked about setting up my own lab too, but don't have the background that you do!

 

bolding mine

http://iai.asm.org/cgi/content/abstract/68/10/5881

 

Received 17 April 2000/Returned for modification 31 May 2000/Accepted 27 July 2000

 

It was recently found that a mixture of nine amino acids down-regulate Clostridium difficile toxin production when added to peptone yeast extract (PY) cultures of strain VPI 10463 (S. Karlsson, L. G. Burman, and T. Åkerlund, Microbiology 145:1683-1693, 1999). In the present study, seven of these amino acids were found to exhibit a moderate suppression of toxin production, whereas proline and particularly cysteine had the greatest impact, on both reference strains (n = 6) and clinical isolates (n = 28) of C. difficile (>99% suppression by cysteine in the highest toxin-producing strain). Also, cysteine derivatives such as acetylcysteine, glutathione, and cystine effectively down-regulated toxin expression

 

 

 

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.

[momto2pandas]

I just got an email from Dr. Cunningham on this very topic. 2 kids is $800.

 

 

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!

[matis_mom]

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?

Simplygina,

I hate to break it to you but a lot of those symptoms sound like PANDAS to me. Bedwetting is VERY common in PANDAS, and then you have the OCD-type behaviors (counting, contamination fears). Also, the rash in his bottom could be peri-annal strep.

My son had the bed-wetting, contamination fears, hand-washing, anxiety, etc. He had strep in his GUT. None of the common strep symptoms.

I would suggest you start keeping a journal, and if you can, get someone to do a comprehensive GI pannel (stool sample analysis). Did you ever test his titers? Maybe your pediatrician will just oblige and run those for you.

 

Isabel