A Very Special SFL: PANDAS and Rheumatic Fever

So, I don’t normally blog about personal issues, but I am making an exception here because I think that people should know more about unusual reactions to the Strep A bacterium.  Our oldest kid was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (or PANDAS) when he was 7.  You can read more about PANDAS here and here.

Basically PANDAS works like this:  young child has sudden onset of acute OCD symptoms caused by antibodies produced in reaction to Strep A presence that ‘misfire’ and attack things other than the bacteria. And, generally speaking, the child will have mild underlying OCD, which is exacerbated in a PANDAS situation; in other words, most believe that PANDAS doesn’t cause OCD (though there is some thought that it might) so much as it exacerbates it.

In our case, we had no idea that our child had either strep or OCD . He just suddenly went crazy. It was very scary and not helped at all by a pede who told us to just give him some benadryl to make him sleep. We had no idea what was going on and had never heard of PANDAS. A colleague heard about our situation and asked what the strep test results were; when we said our child did not have strep, he told us to get him tested ASAP. So I immediately took him in and demanded a strep test, to which the pede scoffed and said that he thought I was ‘grasping at straws’ if I thought PANDAS was really the cause of our issues.

We got the test anyway and sure enough, he had strep.

By the time the second dose of antibiotics was taken, our child was almost back to normal.

We have had several more incidents of this since and treat separately for OCD, as well. We have routinely had him swabbed whenever someone around us gets strep; in addition, we have been swabbed. We only recently found out that he should have been getting ASO titer blood work done. But supposedly he will grow out of this.

Researchers have looked to rheumatic fever in understanding how PANDAS works, as rheumatic fever is another situation where the antibodies produced to fight strep go haywire. In the case of RF, the antibodies attack heart valves, joints, and other parts of the brain.  Which brings me to the second chapter of this very special SFL episode.

About four years ago or so, I suddenly had acute joint pain and a fever; the fever lasted a few days, the joint pain lasted several weeks. I also noticed that I had gotten a weird little nodule on my knee. I went to the doctor thinking that I had just picked up CSV or Fifth disease from the kid, as both cause those sorts of symptoms in adults. I also wanted to make sure that I didn’t have mono. Anyhow, doctor essentially said I was fine. End of story.

Two years later, when I was pregnant with our second child, I had a fever and joint pain. Joint pain was chalked up to pregnancy; fever to walking pneumonia. I also had a heart murmur (not rare in pregnancy), erythema (weird and chalked up as nothing), fainting spells, dizziness, and heart palpitations.  All were considered just part of a rather difficult pregnancy.

Since then, I have had approximately 6 more incidents of sudden onset of high fever and extreme joint pain. I was tested for various things like Lyme Disease, rheumatoid arthritis and lupus – all negative.  I was shuttled around to various doctors until I was ready to give up. After a year, they finally sent me to an epidemiologist, who was very thorough and interested in my symptoms, especially when I told her about my son’s PANDAS. She ran a ton of blood work and informed me a couple of days ago that my ASO titer test (the first one that had been done on me, apparently) showed extremely high strep antibodies and that it looked like I may have or have had rheumatic fever.

RF basically manifests in two ways – migratory arthralgia and carditis. I don’t feel like going into all the details, so you can read more about RF here or just Google it yourself. Long story short, it is rare and it sucks, though it certainly is not as bad as many other things. I am currently in the process of getting in to see a cardiologist so that we can see if there is any cardiac damage, which would be a lot easier if I could just make the appointment myself as I have already been informed that April and May are “filling up fast.”  But of course I have to wait for my GP to do it.

So, do I have it or have I had it? Right now, we are at the “looks like it” stage and won’t know what, if any damage there has been to my heart until I see a cardiologist. But IF it is indeed RF, then I have had multiple incidents of it – as many as seven or eight, to my knowledge.

Yeah, RF is rare. But it isn’t like we don’t already have a House of Weird Strep situation. Not to mention that over the years, I have repeatedly asked my various doctors, who all knew about our son’s PANDAS, whether I might have latent strep, whether it could be strangely manifesting, and whether it could be causing my symptoms.  I even specifically brought up RF on at least one occasion.

And really, I may not have RF at all. I could just be freaking the fuck out over nothing. And even if I have/have had RF, I may not have any cardiac damage. I am keeping my fingers crossed. But if there is damage, it pretty clearly could have been prevented.

So, my point in this is that you should always trust your instincts that something is wrong. If your kid suddenly starts acting completely nuts, force your doctor to run a strep test (including a rapid, 48 hour culture, AND ASO). When you know that something is wrong with you, don’t get discouraged when they keep finding nothing amiss. YOU know when something isn’t right, so keep at it until you find a doctor that takes you seriously.

At any rate, I am going to take a bit of a break from blogging, though I will update this when I find out about the cardiac issues. I am sure that everything will be fine, so don’t worry about SFL. I am pretty sure that most lawyers don’t have hearts to begin with.