JuliaFaith Posted May 15, 2014 Report Share Posted May 15, 2014 (edited) Just had ds's weekly appt. for Neurofeedback at MD's. During our short discussion, I mentioned that someone on this forum had found strep in their child's mouth (thank you!). It was her that discovered it! Such a small world. She said that she has a couple of patients that have been like my son, PANDA symptoms seem to linger and not go away completely. My son had strep show up positive for the first time ever, 3 months ago in her office. She treated him with Abx but some "brain" symptoms have lingered. Now today, we have this conversation, so she tests his mouth. He is positive for Strep! She tested mine and it is negative. His father just started using the mouthwash (prescription) a week ago for mouth surgery tomorrow. Son says he has started feeling a little better in the last week...seeing a pattern here. Dr. prescribed the mouthwash (Chlorhexidine Gluconate) for 4 weeks for son. Xylitol gum was recommended as well. Asked that dh continue to take his for another 3 weeks. Will be so interesting to see the results. Dr. is thinking that maybe strep in the core cause of son's PANDAS and that strep may just be hiding in unusual places in those that are testing negative in the throat. This, after I have been saying, for 4 years, that strep is not his trigger!!! Wow! :-) Edited May 15, 2014 by juliafaith Link to comment Share on other sites More sharing options...
Kayanne Posted May 15, 2014 Report Share Posted May 15, 2014 So a swab to the back of the throat is negative, but swabs on other parts of the mouth are positive? Do you mind elaborating specifically where in the mouth? That's very interesting. Thanks for sharing. Link to comment Share on other sites More sharing options...
4Nikki Posted May 16, 2014 Report Share Posted May 16, 2014 There are some youtube vids of people and doctors removing stones from the tonsils. Appearently some think the tonsils are a filter for collecting things like bacteria. I have no clue but i can see its possible for strep to hide in there. Link to comment Share on other sites More sharing options...
Mayzoo Posted May 16, 2014 Report Share Posted May 16, 2014 (edited) T/A last year in Feb. Kiddo's tooth swab (at home) was faintly positive. I get lesions in my mouth (not canker sore, long lesions. Stress the dentist says) and a direct swab on one of those was negative. I am testing my teeth now. Neither of us has a sore or red throat right now, so I have not tested our throats lately. Maybe I should test hers again . My tooth swab was faintly positive as well. How much of this can be attributed to "strep bacteria are everywhere"? I have often thought the lesions in my mouth were yeast related, but after further thought after reading this and the other thread, a day or two of Chlorhexidine always clears them up in the past. An antibacterial would likely not clear up yeast (I spend so little time thinking about my little issues in comparison to kiddos issues), so my lesions must be bacteria related, and now a faint positive for strep...................hmmmmm. Edited May 16, 2014 by mayzoo Link to comment Share on other sites More sharing options...
JenniferG Posted May 16, 2014 Report Share Posted May 16, 2014 We have had a hard time getting strep cultures to be positive. I purchased that at home kit for rapid strep. Still negatives left and right. And then this year I am watching the Pedi do a r/s and she says as she is doing to that she needs to touch my sons cheek first to wet it. So I started doing that at home...cheek and tongue. Now I have been getting positive cultures left and right. We having been battling recurrent strep since Jan. And they just got their tonsils out 3 weeks ago. So tomorrow I am culturing the tongue and cheek only!! Link to comment Share on other sites More sharing options...
Mayzoo Posted May 16, 2014 Report Share Posted May 16, 2014 I guess we are going back to the xyliwhite toothpaste as well as chlorhexidine rinsing. Link to comment Share on other sites More sharing options...
Mayzoo Posted May 16, 2014 Report Share Posted May 16, 2014 We have had a hard time getting strep cultures to be positive. I purchased that at home kit for rapid strep. Still negatives left and right. And then this year I am watching the Pedi do a r/s and she says as she is doing to that she needs to touch my sons cheek first to wet it. So I started doing that at home...cheek and tongue. Now I have been getting positive cultures left and right. We having been battling recurrent strep since Jan. And they just got their tonsils out 3 weeks ago. So tomorrow I am culturing the tongue and cheek only!! You might want to throw in an extra of just a swabbing of their teeth as well. I did my check lesion first, then did my teeth next. Link to comment Share on other sites More sharing options...
Rachel Posted May 16, 2014 Report Share Posted May 16, 2014 I'm wondering how soon it will be until our main stream doctors catch on to this. The more I think about this, it really does make sense. I'm wondering if this is the reason why my son never tested positive for throat swabs until this year. Is the toothpaste and mouth wash by perscription only? If so I am going to mention it to our doctor and see if we can get a prescription. Link to comment Share on other sites More sharing options...
Mayzoo Posted May 16, 2014 Report Share Posted May 16, 2014 You can get xyliwhite toothpaste at amazon.com. They make a xylitol based mouth wash as well available at amazon also. The chlorhexidine mouth wash is by prescription only, and the brand name is Peridex. Link to comment Share on other sites More sharing options...
Mayzoo Posted May 16, 2014 Report Share Posted May 16, 2014 I am wondering if our kits are just picking up the normal strep bacteria found on the teeth responsible for decay and plaque, streptococcous mutans, rather than true strep A. I guess I will have to read my kit again to see what it is sensitive too. http://www.textbookofbacteriology.net/normalflora_5.html Link to comment Share on other sites More sharing options...
JuliaFaith Posted May 16, 2014 Author Report Share Posted May 16, 2014 On phone so excuse typing. Kayanne--swabbed cheek/teeth 4nikki-this is when I am glad we did tonsillectomy Mayzoo--thank you for the toothpaste/mouthwash ideas! Just the one strain of strep that the swab tests (per our Dr.) can be found in a few places. There are several strains. Link to comment Share on other sites More sharing options...
JenniferG Posted May 16, 2014 Report Share Posted May 16, 2014 Just swabbed boys mouth, cheek, gums, teeth......instantly positive!!!!! Wish I would have seen you post about teeth only first, mayzoo. So they were just put on Rifampin and one son has gotten sever belly pain and diarrhea. Does he need to even be on it? Is this a topical thing that systemic antibiotics won't cover? Now what?? Link to comment Share on other sites More sharing options...
Kayanne Posted May 16, 2014 Report Share Posted May 16, 2014 I am wondering if our kits are just picking up the normal strep bacteria found on the teeth responsible for decay and plaque, streptococcous mutans, rather than true strep A. I guess I will have to read my kit again to see what it is sensitive too. http://www.textbookofbacteriology.net/normalflora_5.html I have no background in biology, so I can't attest to the accuracy of these wikipedia entries. But, I'm pretty sure rapid strep tests are only testing for Group A Beta-Hemolytic Strep (GABS). The bacteria that causes strep throat (RF & SC) is strep pygoenes and falls under this category. The strep mutans that causes cavities is in the Group A category of viridans. So if your at-home test is positive, it's probably positive for GABS. Here are the wikipedia entries: Streptococcus - http://en.wikipedia.org/wiki/Streptococcus Rapid strep test - http://en.wikipedia.org/wiki/Rapid_strep_test My children's ped always swabs just the back of the throat, I'm going to let him know to try the inside of the cheeks and teeth. Link to comment Share on other sites More sharing options...
JuliaFaith Posted May 17, 2014 Author Report Share Posted May 17, 2014 jenniferg--My son was on Azith for 1 month before testing positive for the strep in mouth, hence the mouthwash. JenniferG 1 Link to comment Share on other sites More sharing options...
3bmom Posted May 17, 2014 Report Share Posted May 17, 2014 This is so interesting! At the Northeast conference the sinuses were mentioned as heavy strep areas and last month at the Northwest conference anal strep was brought up. Why do so many Drs consider a throat swab as definitive. We were positive only once which was our onset to PANDAS. JenniferG 1 Link to comment Share on other sites More sharing options...
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