Help! Strep carrier son infecting PANS sibling

[boysrlove24]

Hi everyone,

 

My DS12 is battling Lyme and PANS with constant tics and other related issues. Our story started a year ago with a high ASO titer blood test after sudden onset tics. He's since been tested positive for Lyme and co-infection. My younger DS9 'so far' has not presented with PANDAS/PANS behaviors but he is a strep carrier. In the last 6 months he's been treated for strep 4 or 5 times - it continues to come back and to make it even more difficult he NEVER has strep symptoms (fever, sore throat, etc) so it's a guessing game. Today I noticed an increase in my DS12's tic and decided maybe it's time to get a strep check for his little brother. Sure enough, positive. Now he's on clindamycin for 10 days and then it will be a waiting game for another month or two before it comes back. I'll know it's back when my older son's tic ramps up...

 

Here's my question -- does anyone have experience with this? Any suggestions? Should I have my carrier son's tonsils/adenoids removed? I just don't know if removing his tonsils will help anything since he's a carrier. Won't he still be a carrier without his tonsils? What about a low dose antibiotic for him to keep the strep at bay? The difficulty here will be that he gets strep year around...it's not tied to strep in his classroom or school, it's just in him - so he'd have to be on a low dose antibiotic all the time not just during the winter.

 

He continues to make his big brother sick and has also passed it on to me twice a couple of years ago.

 

Would love to hear your thoughts! Thank you!!

[sf_mom]

Does your younger DS have any symptoms of Lyme even though he has no symptoms of PANS? You may know this already, those with Lyme often have strep as a co-infection and have difficulties eradicating it. Could it be they were both exposed or possible gestational Lyme?

 

I would test his IgG subclasses, also test him for Lyme (I wouldn't treat unless he has symptoms), purchase some MMS and have him gargle in back of throat and spit out - twice weekly with 10 drops in about 10 oz of water.

 

Here is some information on MMS:

 

http://www.mmsdrops.com/what-is-mms/

 

Here is where to buy:

 

http://mmsforhealth.com/index.php?route=product/product&product_id=69

Edited September 16, 2016 by sf_mom

[wisdom_seeker]

I just watched a video by Dr. Sue Swedo, who says that true carriers are rare (defined as having strep but not mounting an immune response, and no symptoms); most commonly children have "asymptomatic strep infections", in which they don't have the sore throat / fever, but their immune systems are involved.

 

Since your younger son gets recurrent strep infections, it may be useful to take him for another throat culture a week after he finishes this antibiotic cycle, to make sure that it got eradicated. Rather than waiting for your canary to start ticcing.

Ahh -- I found it: advice on how to verify if they're a true strep carrier:

 

 

The strep carrier has a positive throat culture, but does not show symptoms of an acute strep infection or show a rise in strep antibody levels. In clinical practice, identifying a strep carrier is problematic.

Following treatment, the patient needs to be seen again to determine whether strep is present when the patient does not have a sore throat. In addition, antibody levels need to be drawn when the patient has a sore throat and then drawn again four to six weeks later to measure strep antibodies. If antibiotic therapy has been given to treat prior symptoms, it may suppress the antibody rise, thereby negating the usefulness of this test.

http://www.pediatricweb.com/webpost/iframe/MedicalConditions_465.asp?tArticleId=187

 

Which antibiotic to eradicate it?

 

Can you get a throat culture next time with drug sensitivity testing? So that you can be sure that the antibiotic is the correct one. Or, here is the advice from pediatricweb, on recurrent strep:

 

 

 

Clindamycin or rifampin, in combination with a second antibiotic, such as penicillin, amoxicillin, or a cephalosporin, has been used to treat acute, recurrent, and carrier strep throat infections. Routine use of clindamycin is not advocated because diarrhea is a rare, but significant, side effect. Rifampin must be used with a second antibiotic because strep will rapidly become resistant to it when it is given as a single therapy. Patients should be advised that rifampin produces orange discoloration of the urine and tears (permanently staining contact lenses).

 

Lastly, about tonsillectomy. I'm a fan. It helped my kids' sleep apnea, and was less painful than I expected (especially for the 9yo, vs the 14yo). Here's what pediatricweb.com says:

 

 

If a patient has six to seven recurrent strep throat infections over a one-to two-year time span, then a tonsillectomy should be considered after consulting with your primary care physician. Families should be advised that the procedure reduces the frequency of sore throats, and, specifically, strep throats, for two to three years after surgery.

 

Of course, in your case it's less important how many your younger kid has, but how much of an impact there is on your PANDAS kid. So even if it's 4 within 2 years, you could well decide it's worth it. Not to mention, PANS runs in families, so if it was my kid I'd do it. (speaking not as an MD but purely as a mom of two PANS kids).

[wisdom_seeker]

The other question is whether you replace his toothbrush (and wash his cup well) before finishing the antibiotics, so that he's not re-infecting himself with the toothbrush?

 

https://medlineplus.gov/ency/article/000639.htm

 

So I'm not sure whether a tonsillectomy itself would prevent all strep infections. For example, for my kids, the primary site was sinuses, and all sore throats, ear infections, even pneumonia, were complications of the sinuses. What they needed was sinus surgery to remove the diseased tissue and improve drainage; that's why a tonsillectomy wasn't sufficient to reduce how often they got sick.

 

Oh, they also needed to have their sleep apnea discovered and treated! THAT improved their sleep, which improved their immunity, which finally prevented the recurring sinusitis that antibiotics never got rid of for long. (And neither one snored, nor was overweight, both simply were usually tired and crabby and often sick)

 

So YMMV, but it's really important to figure out what all is contributing to the bad immunity and/or sources of infection -- consider bad sleep, recurring stress, nutrition, regular re-infections from toothbrushes or another family member (or grandparent, babysitter or dog), etc. Figuring out these other factors will of course also help with fighting Lyme etc.

 

Good luck!

 

 

[tj21]

I second the toothbrush replacement, or run it through the dishwasher. Years ago DH had recurring strep infections despite antibiotics and MD said to make sure toothbrush (and cups, etc.) are sterilized to avoid reinfection.

Good luck!

 

(My PTSD kicks in as soon as I see/hear any tic increase w/DS17). "Canary," that's a good analogy.

[boysrlove24]

Does your younger DS have any symptoms of Lyme even though he has no symptoms of PANS? You may know this already, those with Lyme often have strep as a co-infection and have difficulties eradicating it. Could it be they were both exposed or possible gestational Lyme?

 

I would test his IgG subclasses, also test him for Lyme (I wouldn't treat unless he has symptoms), purchase some MMS and have him gargle in back of throat and spit out - twice weekly with 10 drops in about 10 oz of water.

 

Here is some information on MMS:

 

http://www.mmsdrops.com/what-is-mms/

 

Here is where to buy:

 

http://mmsforhealth.com/index.php?route=product/product&product_id=69

Thank you so much for the tip on MMS drops...I've never heard of that but will look into it today. Regarding Lyme...that's a very interesting thought. Gestational lyme had not occurred to me and I did not know that strep was a co-infection of Lyme. It makes me wonder if my DS12 has it as a co-infection...because he started this whole thing with sky high ASO titer of 678...and then it took several months of strep treatment that wasn't helping him to figure out he has Lyme. BUT, his ASO scores remain high and his tic continues even after months of lyme treatment. I've read that ASO scores can stay high while treating lyme so I just sort of put that to the side but now it's eating at me a bit as I ponder strep as a co-infection.

[boysrlove24]

I just watched a video by Dr. Sue Swedo, who says that true carriers are rare (defined as having strep but not mounting an immune response, and no symptoms); most commonly children have "asymptomatic strep infections", in which they don't have the sore throat / fever, but their immune systems are involved.

 

Since your younger son gets recurrent strep infections, it may be useful to take him for another throat culture a week after he finishes this antibiotic cycle, to make sure that it got eradicated. Rather than waiting for your canary to start ticcing.

Ahh -- I found it: advice on how to verify if they're a true strep carrier:

 

 

The strep carrier has a positive throat culture, but does not show symptoms of an acute strep infection or show a rise in strep antibody levels. In clinical practice, identifying a strep carrier is problematic.

Following treatment, the patient needs to be seen again to determine whether strep is present when the patient does not have a sore throat. In addition, antibody levels need to be drawn when the patient has a sore throat and then drawn again four to six weeks later to measure strep antibodies. If antibiotic therapy has been given to treat prior symptoms, it may suppress the antibody rise, thereby negating the usefulness of this test.

http://www.pediatricweb.com/webpost/iframe/MedicalConditions_465.asp?tArticleId=187

 

Which antibiotic to eradicate it?

 

Can you get a throat culture next time with drug sensitivity testing? So that you can be sure that the antibiotic is the correct one. Or, here is the advice from pediatricweb, on recurrent strep:

 

 

 

Clindamycin or rifampin, in combination with a second antibiotic, such as penicillin, amoxicillin, or a cephalosporin, has been used to treat acute, recurrent, and carrier strep throat infections. Routine use of clindamycin is not advocated because diarrhea is a rare, but significant, side effect. Rifampin must be used with a second antibiotic because strep will rapidly become resistant to it when it is given as a single therapy. Patients should be advised that rifampin produces orange discoloration of the urine and tears (permanently staining contact lenses).

 

Lastly, about tonsillectomy. I'm a fan. It helped my kids' sleep apnea, and was less painful than I expected (especially for the 9yo, vs the 14yo). Here's what pediatricweb.com says:

 

 

If a patient has six to seven recurrent strep throat infections over a one-to two-year time span, then a tonsillectomy should be considered after consulting with your primary care physician. Families should be advised that the procedure reduces the frequency of sore throats, and, specifically, strep throats, for two to three years after surgery.

 

Of course, in your case it's less important how many your younger kid has, but how much of an impact there is on your PANDAS kid. So even if it's 4 within 2 years, you could well decide it's worth it. Not to mention, PANS runs in families, so if it was my kid I'd do it. (speaking not as an MD but purely as a mom of two PANS kids).

Hi! Thank you so much for your input - greatly appreciated. I lose sleep thinking that PANDAS/PANS is lurking for my DS9 especially with his strep issues. He seems to worry a little more and loses his appetite when he's got strep which has been another clue for me that he's infected again...so it sounds like he's definitely being impacted by strep but hasn't had full blown PANDAS symptoms yet...but I fear one day it's just going to hit him. I think I will look into a tonsillectomy but I agree that I need to find the source of the infection. In your comments you pasted info on carrier status and it referred to sore throats...that's the interesting thing is he never gets a sore throat either. No symptoms at all. So that seems like he truly is a "carrier" right???

 

I have not changed his toothbrush or cleaned his cups...I'm frantically sanitizing now today!!! Thank you both for that tip.

 

I also called the vet today to see if he can test the dog for strep - they said, "STREP??" Yes, I said...and they asked the vet and he had never heard of that but was going to look into it. So many days I feel like I'm completely insane.

 

I will DEFINITELY take him in a week after his antibiotic to see if it's gone ...interestingly last time he was treated I did that two weeks later and the throat culture came back negative. 2 months later is was back - what does that mean? Carrier?

[boysrlove24]

I second the toothbrush replacement, or run it through the dishwasher. Years ago DH had recurring strep infections despite antibiotics and MD said to make sure toothbrush (and cups, etc.) are sterilized to avoid reinfection.

 

Good luck!

 

(My PTSD kicks in as soon as I see/hear any tic increase w/DS17). "Canary," that's a good analogy.

Thank you!!!! Cleaning cups and replacing toothbrushes immediately!!!! You mentioned your DH had recurring strep infections despite antibiotics...how did you fix it? Tonsillectomy? Other???

 

PTSD - so true. I see tics and my stomach flops over and I want to barf.