Understanding Acute Rheumatic Fever

This is by far the most feared complication of Strep throat.  Any discussion of Strep throat would be incomplete without a brief discussion about Acute Rheumatic Fever.  This complication is definitely something you DO NOT want your child to get.  It can be pretty nasty.  At best, it means your child will be getting a shot of penicillin every month until they are about 18 years old.  At worst, it could lead to heart complications and even death.  Sounds scary right???

Well, you have to keep things in perspective and let rational decision-making be the rule of the day – not irrational parental anxiety.  For example, every day when you strap your kid into the car seat and pull out of the garage, there is a statistical risk that you will be involved in a fatal motor vehicle accident.  Do this every day of the week for a year and that risk goes WAY up.  Do it every year for 10 years and you further increase that risk by a factor of 10.  Accidents account for the number one cause of death in children outside the newborn period.  However, no one would suggest that you abandon your car during those parenting years.  Instead, you assess the risk and make a rational decision.  The same applies for Strep throat and Acute Rheumatic Fever.

The Basics

What exactly is Acute Rheumatic Fever?

To put it briefly, it is a reaction of your body to fighting off a Strep infection.  When you get a Strep infection, your body makes antibodies.  These are proteins that are specifically designed to kill the Strep bacteria.  They are very powerful.  Once your body make these antibodies, it is just a matter of time before the Strep is killed.  Normally this process takes 3-5 days, thus the first time your child gets a Strep infection, it will likely take them at least 3-5 days to get better on their own.  The best news is that your body is Smart.  Your body remembers how to make these proteins, so next time your child gets a Strep infection it may only take 2-3 days to fight off the infection.  Every time your child gets a Strep infection, their body gets a little smarter and makes the antibodies a little faster.

Now, in some kids (for reasons that no one understands), when the body makes these proteins, not only do they attack the Strep bacteria, but they also attack different organs in the body.  The most feared organ that can be attacked is the heart.  These antibodies can damage the heart and cause all sorts of heart problems.  In most cases, their is minimal or no damage to the heart.  However,  in some cases it can be very serious leading to long-term heart problems and even death.

How common is Acute Rheumatic Fever?

Well… it depends on where you live and when you lived.  Historically (50 to 100 years ago), it was pretty common – say about 3% of all untreated Strep throat infections.  That means that about 1 in 30 kids with a Strep throat would get Acute Rheumatic Fever.  If you live in a third world country this is still the case.  Thus I can rationally draw two conclusions from this – Acute Rheumatic Fever is a very big deal if you live in a third world country or you were alive in America during the early 1900s.

But what about America today? How common is ARF?

The short answer is … not very common.  In fact it is so uncommon that it is hard to estimate how common it is.  Now some Smart Parents might jump to the conclusions that it is because we hand out antibiotics to every kid that walks in our office. While that may play some role, it seems unlikely to play a major role and this is why….

Despite all my ranting about use and abuse of the medical system, there are still hundreds of thousands of kids out there who have little to no access to health care.  Thus, there are literally thousands of kids every year that get a sore throat (probably Strep throat) and never seek medical care.  More, to prevent Strep throat you must take your antibiotics as prescribed – in most cases twice a day for 10 days.  This happens almost never.  So if ARF happened to 1:30 kids with Strep throat who either never made it to the doctors office or to 1:30 kids who only took a few days of their antibiotic and then stopped… well, then, ARF should be everywhere.  Literally we should be seeing thousands of cases a year.

The reality is that we almost never see a case.  In fact, in over a decade of taking care of children, I have not seen even one case in this country.  Now, when I volunteer overseas, this is not the case.  I have seen hundred of kids with it in Cambodia, Ecuador, and other third-world or developing countries.  So why is this?  Like most of the medical advances in this country, it is probably related to two of the major differences between the developed and the under-developed world… Hygiene and Nutrition.

Now this a favorite topic of mine, and one that I could write volumes about.  Suffice it to say when kids are NOT malnourished and they don’t poop and pee in the same pond that they drink water out of, they don’t get sick very much.  Major improvements in nutrition and sanitation/hygiene are probably the major determinants of the advances in life expectancy for Americans.  Some people may find this hard to believe, but those are the facts, and the more your dig into the matter the stronger the evidence.

So when you look at different reports that try to estimate how common ARF is in this country.  The numbers are all over the place.  On the low end I find something like 1 in 3000 cases of untreated Strep throat.  On the high end I find something like 1 in 30,000 cases of untreated Strep throat.

Just how bad is ARF?

How often do kids get heart problems?

Most estimates are that about 10% of kids with ARF will have heart involvement.  The spectrum of heart involvement is very diverse.  Some will just have transient heart problems that will go away.  Others will have more serious heart problems that may damage the valves of the heart and eventually require heart surgery.  Still others will have even more serious heart problems and die from these problems.  So if 10% of kids who get ARF have heart problems, then that means that about 1 in 30,000 to 1 in 300,000 kids who have untreated Strep throat will go on to get ARF and have heart problems.

How often do kids who have heart problems die?

Probably about 10% of kids with heart problems will die from those heart problems.  In some kids that may be early in the course of the illness, in others this may be after years and years of heart problems.  So doing the math once again, if 10% of kids with ARF that have heart problems die from those problems, that means that 1 in 300,000 to 1 in 3,000,000 kids with untreated Strep throat will die from ARF heart complications.

Putting Things in Perspective

Roughly 2,000 kids die each year from car accidents.  Based on the latest UNICEF stats there are probably about 30,000,000 kids in the U.S between the ages of 5-15.  Let’s also assume that every one of them got a Strep throat infection this year.  Then let’s assume that we did not treat any of them for their Strep throat.  If you do the math that would mean that some where between 10 and 100 kids would die from Heart disease that resulted from ARF.  Putting it another way – your child is roughly 20 to 200 times more likely to die as the result of a car accident than from ARF and Heart disease.  Again those are just the numbers.   Check out the references above and do the math yourself, then… You Decide.

My Conclusion

What does all this mean? Well I draw these conclusions:

  1. Acute Rheumatic Fever is not something I would want my child to have.
  2. Acute Rheumatic Fever can be very serious.
  3. The risk of getting Acute Rheumatic Fever, with heart disease, and dying from it because I did not want to treat my child’s Strep throat is very, very small.  In fact, my child is probably equally likely to die in a car crash on the way to the doctor’s office.

Remember… I am not your Doctor!

These are my conclusions and how I approach this illness in my practice.  I am NOT your doctor and your child is not my patient.  This information is meant to educate you so that you can engage your own health care provider in an intelligent discussion about the diagnosis and treatment of sore throat.

Never stop a prescribed medical treatment based on something you read on the internet.  This is a very BAD idea.  If you read something that causes you concern about the prescribed therapy for your child, either discuss it with your health care provider or seek a second medical opinion.

What’s Next?

Acute Rheumatic Fever is just part of the story.  While I am making a case that treating every case of Strep throat to prevent ARF may not be the best medical practice, there are some reasons why you might consider treatment.  In some situations you might consider treating Strep throat to prevent a throat abscess.

Comments

  1. Melanie says:

    Love this information. Now if more doctors were not afraid to speak the truth and were not just worried about getting sued. I love it when my kids doc says, “go home, rest and have some chicken soup”. I don’t want meds and 90% of the time I get a prescription I don’t fill it. Thank you for common sense, not much of that around these days. I love Dr. Mendelsohn and can tell you like him too.

  2. Tammy Minard says:

    My son was diagnosed in 2005 with ARF. He had been on antibiotics about 6 weeks before for strep throat but for some reason it did not kill it. He had the arthritis instead of problems with his heart. I assure you he has very good hygiene and eats well. After hearing how rare this is it is devastating to me. I can’t find a doctor that knows much about it to answer my questions and it is very frustating. If anyone knows where I might find some help please let me know! Thanks!!

  3. Tammy,

    When I use the word hygiene I am using it in the context of societal hygiene. This means the population as a whole has good access to clean water and sanitation. When a population has good access, like we do here in the US, we tend to spread things around less. Thus by getting Strep, this does not say anything about your son’s individual hygiene. Even with the best societal hygiene, some kids will still get sick. This sounds like the case with your son. Same goes for nutrition. In general, when a population is malnourished, they get sick more. Again, this does not say anything about your son’s individual nutrition because even the most well-nourished kids may still get sick.

    As for a doctor – I suggest finding the closest major medical center with a pediatric specific hospital. Have a look at this list of hospitals and pick one from this list. You are likely to get good advice and treatment from them all. The kind of doctor you are looking for would be a pediatric rheumatologist.

  4. Tammy Minard says:

    Thank you so much for your response. I am going to check out the list of hospitals. I did take him to a childrens hospital in Indianapolis when he was diagnosed but the two doctors we saw had never seen a cased of ARF before. I guess that is why I was so frustated becuase everything they were telling me was coming out of a book which I totally understand because this is so rare. I just wish I could find someone who had actually seen and treated it before. My main question is that if there was no heart damage at the very begining could there be any now? We ran all the tests as soon as he was diagnosed but none since. When he was first diagnosed he had to take 27 baby aspirin a day for 6 weeks and he is still on the penicillian now and probably will be until he is an adult. He seems to be doing very well except he is always the first kid to get tired. And when he gets tired he almost always complains of his knees hurting. Thank you so much for taking the time to respond to my comment!!

  5. Hi Tammy,
    Please help…I am concerned that my 8yr old has gotten ARF. He was diagnosed with strep, he was put on zithromax 2 days after he finished the treatment he broke out with scarlet fever. He had large red hives all over his face and arms. Raised hives. Tested positive for strep again and he was again put on a larger dose of zithromax which he finished. About a week and 1/2 ago his hivey rash has now turned to a “lacey”, stringy looking under the skin type rash that appears and disappears depending on heat, his activity and the sun. He is overly tired and has complained of pain in his knees. I took him to the ER last Sunday with the onset of this horrible different,specific rash and they felt that it was Fifths disease (tests came back the following day negative). All the research I am doing, is leading me to believe that he may have this ARF, the docs now put him on another antibiotic and aspirin, 4-twice per day. Than they want him back for a strep test (the last 3 have been positive). My concern: I cant find a doctor that really knows much about this and I am concerned that if he has it, it is so rare that he will be misdiagnosed and if we are in the beginning stages (EKG done is good/ blood markers for inflamation good) than these could easily change depending on the advancement of the disease. Did you ever find a name of a doctor that has seen this before? I found 2 in Salt Lake City and thought maybe I should contact one. Also, it seems as though my son has hit 2 of the major jones criteria for diagnosing this isn’t that enough for a diagnosis or is it that the doctor is stumped you think? Any help, I would appreciate.
    Thanks,
    Shelbi Smith (spokane, WA)

  6. rosie's mom says:

    ALWAYS GET TREATED FOR STREP! Strep is extremely dangerous and ignoring strep by not treating it with antibiotics is a BIG mistake. Strep is more than just a sore throat! Left untreated it can attack your heart, organs and brain. I’ve witnessed first hand with my own health by being a strep carrier for 25 years – it leads to life long health problems with your heart, joints/muscles, fatigue, skin, brain, etc. I’ve witnessed how strep attacked my daughter’s brain. Dr. Bouboulis in Darien, CT understands strep’s consequences. Shelbi – please check latitudes.org/forums to find local doctors who understand strep. Look in the PANDAS forum (neurological disorder caused by strep) – this disorder doesn’t relate to your son’s symptoms but the forum is a community of parents of kids with strep and they share names of qualified strep doctors – there may be a more local immunologist for you in WA. Hope your son is better soon.

  7. These things you mention are rare and there is ZERO association with being a strep carrier and these things that you describe. A Strep infection, in very rare situations, may lead to the complications that I detail in my posts. The PANDAS that you speak of is a rather controversial diagnosis. There are some who strongly support its existence and others who think it is completely BOGUS. My bias is that PANDAS it is just an excuse to try and explain one of the thousands of health problems we still know very little about, although I will be the first to admit I am not an expert on rare neuro-psychiatric disorders.

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