Luckily for all of you, I recently discovered my kids are strep carriers. Here’s how to know if YOUR kid is a strep carrier.
Here’s the backstory:
My oldest son, Everett, had some persistently swollen lymph nodes on his neck I was concerned about. Because Everett was born so prematurely (23 weeks, you can read that story here) I have to admit that I’m a little more vigilant when it comes to his health. Listen, when you’ve seen your kid almost die about a thousand times and have to be revived by nurses and doctors, it takes a toll on you. I’m not a hypochondriac, but I am vigilant.
He had no symptoms of anything else, which is why it came as a shock when he tested positive for strep at the pediatrician’s office. The fact that he had absolutely no strep symptoms other than swollen lymph nodes should have been a good indication that he was at least potentially a strep carrier, but it was never mentioned.
I called the pediatrician’s office to request a strep culture for my other son, Storm, because if one kid has it it’s pretty likely the other does too. The pediatrician’s office acted like I was insane for this request. They said if he didn’t have symptoms he didn’t need to be tested, but Everett also did not have symptoms. I pushed anyway, and guess what? Storm had strep as well. Zero symptoms.
Both boys were put on a ten day course of antibiotics. Everett had only had antibiotics once before, for strep (excluding in the NICU). Storm had never been on antibiotics. I have only given antibiotics for strep because it’s not something you want to go untreated. Something was nagging me with the antibiotics – I just intuitively felt like they weren’t necessary and weren’t going to do anything, but I gave them anyway.
After ten days I requested both boys be tested again. Again, the doctors office acted like I was insane for this request. They insisted the boys wouldn’t have strep after antibiotics, especially if they had no symptoms. But considering they never had symptoms, I didn’t find this argument at all logical.
Unsurprisingly at this point – both boys tested positive for strep again.
I left with a prescription for very strong antibiotics. That I never gave them.
When and how to advocate for your children
A second round of antibiotics made no sense to me. They had no symptoms, they tested positive for strep even after a round of antibiotics – I knew something else was up. So I hopped on PubMed and medical journals.
I know doctors hate this, but the reality is that if I wouldn’t have done my own research, my children would have been prescribed round after round of antibiotics, which isn’t just unnecessary – it’s dangerous.
Most mothers are not doctors, but no one knows our children like we know them. If you think something is amiss, if you think something is wrong, if you suspect there is something else at play – look into it. Request more testing. Get a second opinion.
I requested another appointment for my boys and brought up the research about strep carriers. The doctor immediately dismissed me. “No, they’re not strep carriers. And even if they were they’d still need antibiotics and could spread it. You need to give them the second round of antibiotics.” This my friends, it absolutely wrong information. Doctors are not always right.
I agreed but didn’t give them the antibiotics. Instead, after a couple weeks I requested yet another appointment with another provider at the practice. A physician’s assistant.
After explaining everything to her, she said, “Sounds like they’re strep carriers. Why didn’t the other doctors send out a culture instead of just doing a rapid test?”
And that’s when you know you’ve found a critically thinking, respectable provider.
As it turns out, with no symptoms and repeatedly positive tests, especially after antibiotics – your child is almost certainly a strep carrier. What needs to be done is a strep culture, one that has days to grow. If it is negative, congratulations, your child is a strep carrier.
The boys kept testing positive on rapid tests but were negative on the longer strep culture. When they came in with absolutely no symptoms and a positive rapid, the provider should have gotten a strep culture before prescribing anything. And the second and third providers should have requested the same. None of them did. This is when moms step up because doctors are not always right.
The science of strep carriers
The reason I gave my children antibiotics for strep is because strep can cause serious complications like PANDAS and rheumatic fever. Researchers, scientists and doctors do not seem entirely sure as to whether strep carriers are at risk for PANDAS, but many believe there is a lesser risk for rheumatic fever. From the Journal of Pediatric Disease, it is believed that strep carriers do not spread strep and are not at risk for rheumatic fever.
A four year longitudinal study in Pittsburgh showed that majority of children tested for strep were carriers, proving that strep carriers are not uncommon.
I couldn’t find a ton of definitive evidence on strep carriers, whether they spread strep, their risk of developing PANDAS, etc. Which may be a reason why doctors seem to vary so widely in their knowledge and recommendations for strep, how to treat it and how to even recognize a strep carrier.
How to know if your kid is a strep carrier:
These are not hard and fast, definitive ways to know. These are indications your child might be a strep carrier that you need to explore with your doctor.
- your child tests positive for strep with no symptoms
- your child tests positive for strep after a round of antibiotics
- your child repeatedly tests positive for strep
- your child regularly is positive for strep throughout the year
FAQs
If a child presents with no symptoms and does not respond to antibiotics but is still positive for strep, this is a good indication your child is a strep carrier. You need to request a rapid test, if that is negative the child is a strep carrier.
If a child presents with no symptoms and does not respond to antibiotics but is still positive for strep, this is a good indication your child is a strep carrier. You need to request a rapid test, if that is negative the child is a strep carrier.
If a child presents with no symptoms and does not respond to antibiotics but is still positive for strep, this is a good indication your child is a strep carrier. You need to request a rapid test, if that is negative the child is a strep carrier.
Strep carriers do not usually respond to antibiotics rendering them ineffective, but this is something you need to discuss with your doctor.
Many researchers, scientists and doctors do not believe strep carriers are at risk for rheumatic fever but we do not know definitively. It’s best to discuss with your doctor.
Research in PANDAS is severely lacking. At this time it appears that doctors and scientists simply don’t know. It’s best to discuss with your trusted provider, preferably one that is well versed in PANDAS.
Additional sources:
https://www.ncbi.nlm.nih.gov/books/NBK374206/
https://pubmed.ncbi.nlm.nih.gov/7021717/
