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.

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31 Comments

  1. March 18, 2010 at 3:48 pm

    Our mutual friend, Jen, suggested your bog to me. I realize you are going to take a break from your blog while you find out about the cardiac issues, but just wanted to say hang in there. And you are absolutely right about instincts.

  2. March 18, 2010 at 3:49 pm

    I mean blog, not your bog, but if you are from Wisconsin originally maybe you once had a cranberry bog or would that be a cranberry blog … Oh, never mind. That tells you about my brain.

  3. Sara Urban said,

    March 18, 2010 at 5:58 pm

    Agreed. As you know, I had similar problems with the clotting nonsense last fall; I knew something was wrong, kept going to the doctor only to be told I was fine, when I knew damn well I wasn’t fine. And what do you know, I end up in a hospital out of town with a life-threatening problem. Trust your instincts and be your own best advocate.

  4. March 18, 2010 at 7:25 pm

    Whew, that is rough. I would head down south and deliver a comfort casserole, but I suspect it wouldn’t be nearly as tasty as anything you make. So I’ll just send positive thoughts instead for a clean bill of health.

    Absolutely right on the getting doctors to find answers. Not every doctor is aware of every condition, and sometimes conditions don’t even present with normal symptoms. And even worse, not every doctor is even paying attention to the symptoms.

  5. Chenoa said,

    March 18, 2010 at 8:28 pm

    Yikes… Stupid doctors… (I had the same problems with doctors not listening when I knew my uterus was prolapsing… which I could FEEL WITH MY FINGERS but one OB.GYN! couldn’t feel because I wasn’t supposed to have this problem at 24 – doctors have powerful denial mechanisms when patients know what’s wrong with them…) It’s so common-sense to think that if your son has PANDAS, maybeeeee you could have a similar problem if your symptoms match up!

    I’m sorry to hear you have to worry about these things 😦 I hope you get your appointment sooooon!

  6. Lanora said,

    March 18, 2010 at 10:57 pm

    I’m sending you guys lots of love and wishing you all to be well soon. I’m going through my second doctor right now and oodles of testing so I can relate. Stay strong.

  7. March 19, 2010 at 8:36 am

    Sending prayers your way.. hoping for the best and thanks for sharing your experience, I’d never heard of this either.

  8. PurpleGirl said,

    March 19, 2010 at 11:08 am

    I hope the results are positive for you, i.e., no heart damage.

    I went through a period of having strep every 6/7 weeks back in the mid-1980s. I still have my tonsils so my doctor said we might have to take them out — not an easy thing when you’re in your thirties — because the strep germs could continue living in the tonsils without causing an active infection. Anyway, my doctor wasn’t the problem but my boss was. He warned me about taking any more sick time and said that he came to work many times when he had a fever. I tried to explain to him that strep could lead to many other problems if not treated. And I told him I was a time bomb for one of our lawyer-writers who was pregnant at the time. (I worked at Mathew Bender as a copy editor at the time.) The strep problem stopped when I changed jobs. I still have my tonsils and haven’t repeated the cycle in the 20-odd years since. But I watch for the symptoms of strep very carefully.

  9. Gogo Boots said,

    March 20, 2010 at 12:11 pm

    So sorry that you guys have had to go through all of that. It has to be especially difficult as a mom to watch K go through all of that. For years my doctors ignored me about my endometriosis. I lived in agony every month for 12 years. It got increasing worse as the years went by and I kept asking the doctors to test me and they kept insisting that I just take the pill. (Which I refused to do due to my mistrust of the current pharma culture). Anyhow, long story short, four years ago I sat down in my newest OB/GYN’s office completely defeated by the idea of having to try to convince yet another Dr. that something was wrong. At this point, I had had two miscarriages in a year. I was completely shocked when she listened. A week later I had a laparoscopy and it was confirmed that I had endometriosis and that one tube was blocked. 10 months later, my Adrian was born. Fast forward two years to my visit to my new OB in Cali..I go in expressing my previous Dr’s rec to have a laparoscopy every couple years due to the severity of my condition. Her response? “Yeah, lots of people THINK they have endometriosis. Just stop listening to Oprah and take some more vitamins”. I’ve decided to live with the pain. No more docs for me for a bit. Need to regroup and get some insurance that gives me more options as to who I can see.

  10. Elisa said,

    March 21, 2010 at 9:20 am

    Scary Tracy! And so very frustrating. I hope you’re on path to answers…improved quality of care at a minimum!!! Hang in there. Sending good vibes and e-hugs.

  11. southern female lawyer said,

    March 22, 2010 at 11:08 am

    Thanks for all the comments and good thoughts. I am set to see to the cardiologist in a week, though I am at the top of the list for cancelled appointments and hopefully can get in sooner. Happily, these bouts last several weeks, so chances are I will still be in the middle of it when I am seen.

  12. southern female lawyer said,

    March 22, 2010 at 1:24 pm

    …and one other note. I frequently read/hear HRC opponents say things like ‘if Obamacare passes, I will have to wait over a month to see my GP and six months for a specialist!’

    What planet are these people living on? I live in an area with a very high per capita number of physicians. And yet it took me over 7 months to get into an epidemiologist, after being shuttled around by various docs for a year. It has now taken me two weeks to get an “emergency” visit to the cardiologist.

    Just imagine how fucked I would be if we didn’t have amazing health insurance and I haven’t been scrupulous about keeping my health insurance continuous due to pre-existings.

  13. musicmom1956 said,

    March 26, 2010 at 4:52 pm

    Wow I just read this post and to my amazement a coworker has a son with PANDAS. He was just diagnosed 6 to 7 months ago. Like you she has complained about aches, pains joint swelling and the likes. I am going to tell her about you and your son. I am going to strongly suggest she be tested for the strep and possible RF. My thoughts are with you and your son.

  14. Kari said,

    May 30, 2010 at 10:18 am

    Your post made me wonder if the sensitivity to strep might be genetically linked. In our case our son is adopted but it makes me want to connect with his birth family on this issue…

    Our son is 12 yrs old and along with PANDAS he also has FASD (Fetal Alcohol Spectrum Disorders- specifically ARND- Alcohol Related Neurodevelopmental Disorder). He also experienced early life trauma, attachment disruption and has several mental health diagnoses so behavioral issues are already very much a part of our lives, but strep brings them to a whole new level.

    When our son was younger we mentioned to our pediatrician that he had a sudden increase in OCD type behaviors. Our pediatrician had the insight to run a strep culture…and sure enough, it was positive. Another bout of strep a few years later confirmed the experience.

    This year at the end of April our son raged horrifically at school and the police were called. This scene was repeated in early May …and then again in mid-May. He has raged in the past because of his FASD (increased frustration and a lowered ability to manage that frustration- both a result of permanent brain impairment from prenatal exposure to alcohol) but these recent rages were significant enough to warrant calls by school staff to 911. It didn’t fit his previous pattern but my inner mom voice told me to request a strep culture. It was positive.

    My son, like most people with FASD, has an IQ within the average range. He also, like most people with FASD, looks completely normal physically. I wonder if his prenatal exposure puts him at an increased risk for PANDAS since both appear to affect the brain’s basal ganglia. I also wonder how many people might be experiencing punitive consequences or an increase in their psychotropic medication when what they needed was a simple course of antibiotics. Thank you for helping to raise awareness of this issue.

    ~Kari
    http://coffeecatharsis.blogspot.com/2010/05/got-strep.html

  15. southern female lawyer said,

    June 1, 2010 at 7:32 pm

    Kari – I often wonder/worry about undiagnosed SGA-caused issues. How many people are put into programs, onto medication, etc when what they primarily need is antibiotics? I am also very disheartened by the huge lack of intellectual curiosity I have seen in most healthcare providers. I am concerned that our son will be at risk for rheumatic fever, yet whenever I mention this to his providers I get the blank stare. I had one doc tell me he “didn’t do” PANDAS. Whatever that means.

    With your son’s other issues, it may be a good idea to find out whatever you can about genetic predispositions. There are links between PANDAS/RF/SGA infections and things like eating disorders, hairpulling, etc. So much room for research. I know there are some doctors out there who are focusing on this, but not any around here. I wish you and your family the best – thanks for sharing your story. ~ SFL

  16. Liz said,

    July 11, 2010 at 10:39 pm

    Stupid strep bacteria!

    We’ve spent the past year trying to figure out whether my 8 yo daughter has RF or PANDAS. Saw sydenham’s chorea and lots of little ocd’s which changed with the wind. Went to neuro’s, cardio’s, and our dev. ped. to figure it out. I have a house filled with 4 kids with gen. anxiety disorder, some with ADHD, and some with Autism. So ocd’s were not so odd here, but this was something different.

    It’s all that same stupid bacteria, whether RF, PANDAS. Now the next question, how the hell do we get rid of it. I’m tired of trying to figure out what it is and how to treat it. Isn’t there one damn doc who will do their damn job and heal people? The only one helping me really isn’t in the specialty to be doing so, but it’s something! Sorry, had to get this crap off my chest. Guess it’s not as rare as they think.

  17. worried mom said,

    July 26, 2010 at 12:03 am

    I found your blog through a search. My 8 year old has had arthritis and glomerulonephritis from strep over the last 8 months. One month ago, on a Tuesday he started having severe motor tics…. PANDAS. I think I’ll feel better after a cardio consult for my son too. (As a child I had septic arthritisi with no known pharyngeal infection – definitely a genetic link.) Best wishes.

  18. Angie said,

    October 17, 2010 at 9:47 pm

    I just stumbled upon your blog in my search for some answer to my recently diagnosis of Rheumatic Fever… and believe me I’ve been tested and sent to doctor after doctor. With the same exact tests you were given… lyme disease, arthritis, lupus and other autoimmune diseases… to my surprise no answer and just started feeling worse. I have realized that this is probably been in my system for years and it definitely has been a slow onset of symptoms with the pain and discomfort increasing over time. I always could find some excuse for why I did not feel well and even today I try and put on a smile and trudge through the day! However it is getting harder and harder to get through. I could go on and on but I really just want answers and to feel better!!! can anyone help or give me advice?

  19. Analisa said,

    November 7, 2010 at 10:45 pm

    Just stumbled across this blog while once again googling current 2010 RF articles/studies/data. I had RF when I was 11yrs. old w/ chorea, subcutaneous nodules, joint inflammation – no heart involvement that they could find. Now at 38 yrs. I’m in the midst of a recurrence?! I’ve always been very healthy, eat right, exercise regularly, etc…. In June 2010 I started to have ankle pain and swelling – I chalked it up to increased time and incline on treadmill. Went to a podiatrist with a RX for New Balance and Orthotic inserts? In July 2010 pain started to migrate to all joints, some days elbows, some days knuckles, wrists, knees, etc… GP did many labs including an ASO titer that was sky-high. She referred me to a Rheumatologist. He was almost 100% certain this could not be RF – because it just doesn’t exist anymore. Ordered many labs, x-rays, MRI’s and in the next week gave me the RF diagnosis – he was baffled that this was really the case. I’ve seen an Infectious Diseases Dr and Cardiologist and have some valve thickening and murmur this time. I’m on Penecillin injections every 3 weeks for year after which I can switch to the oral meds (for life!). I’ve been on high doses of aspirin and right now I am on steroids once again because inflammation left in ankles is still hanging around and bothersome? Where are you in your treatment? Does this protocol match yours. I feel I’ve been in great hands with the UT Research Group here in SA, TX. They’ve been very thorough and have an amazing Medical Arts and Research Center (MARC) where all Specialties are housed in one 8 story building and all communicate with each other. The one factor that we haven’t touched upon yet is that we have a 8 yr old son with Autism and FREQUENT strep episodoes ???? Would love to hear from you or anyone out there experiencing this?

  20. January 19, 2012 at 7:46 am

    […]  My son was also diagnosed with PANDAS, a very strange and scary thing.  You can read about that here.  The balance between life and work became unmanageable and so I began looking for a position that […]

  21. Mary said,

    February 7, 2012 at 7:30 pm

    The summer before my son started second grade, he began complaining of severe stomach pains as well as joint pains. Soon afterwards he began to display abnormal involuntary twitching that continued to worsen every day. I immediately took him to our pediatrician who then referred us to a neurologist.

    The neurologist ran a series of tests to include one for strep. Long story short-Rheumatic Fever. This poor child had to endure so much pain before the antibiotics cleared things up. It took almost a year before the twitching subsided. He is now 13 and healthy but I will be scheduling an echocardiogram for him soon. Although he had one when all the other stuff was happening and he was deemed okay, I want to make sure that nothing has deteriorated since. He still has occasional joint pain and I am afraid he may always have some RF related problems.

    I suppose the main difference between PANDAS and RF seems to be the onset of OCD in PANDAS patients versus the joint pain of RF patients. It is a scary and heartbreaking thing to see a “healthy” child develop these symptoms and to have no clue what is happening.

  22. Joan said,

    January 20, 2013 at 3:02 am

    Ii was diagnosed with R F. When I was four,presently sixty-seven. Ihave three beautiful sons. Any problems I had growing always had an diagnose of being in my head as no real diagnosis could be found.i did start having heart problems in my late four towers. By my early fifty sa I had atrial fibulation and getting a pace maker. Eight years ago I was tol I had to have my aortic valve replaced and the mistral valve repaired aor replaced. I waited a few weeks and decided that I would have the surgery or I would most likely only live I more year to live. So two weeks later I has the surgery,valves replaced and repaired. The surgery Was successful, except that I stroked I medically ,,caused by a. Small piece of calcium that stuck in my brain. My lefty side was affected by this stroke. I regained my thinking and speech, feelin in all areas of my body. Today I am trying to learn to walk and loosen the tendonson my left hand to elbow so my hand will open and let my fingers relax. My body is tryin, however the flexor in my left groan area has tightened so my left knee does not relax to let me take a correct full step. My therapist, is wonderful and is very encouraging..,he iwant to walk again so badly ,even if it means using this strange looking walker. All test on my heart show thatthe pace maker is working correctly,but when they remove the pacer stop my heart beats at approximately three hundred bpm. So I am 100 percent dependent on my pace maker. However. I am her and greeted my twin great grand sons inyo this world. So I have a lot to be grateful for. I am above the ground! I do have days when my body hurt badly ,my mind is clear and all grace goes to God. I will honor him til Every day I have left. So I was not felt the best hand in life, but. It is/has been a good life.
    I

  23. Liz said,

    April 9, 2013 at 5:22 pm

    Were you treated? You need antiobiotics to kill all strep and then Bicillin-Long acting shots every month for at least five years.
    Cold laser blood irradiation is also a very good idea for both RF and PANDAS; it is antiobacterial and anti-inflammatory and both diseases can’t be cured, just managed. Blood irradiation addresses the pathophysiology. You had RF if your ASO was high for at least 3 months. Short highs are mere infection.

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  25. October 15, 2013 at 1:01 pm

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  26. Obat Rematik said,

    April 24, 2014 at 7:02 am

    Wow I just read this post and to my amazement a coworker has a son with PANDAS. He was just diagnosed 6 to 7 months ago. Like you she has complained about aches, pains joint swelling and the likes.

  27. April 24, 2014 at 7:03 am

    The neurologist ran a series of tests to include one for strep. Long story short-Rheumatic Fever. This poor child had to endure so much pain before the antibiotics cleared things up. It took almost a year before the twitching subsided. He is now 13 and healthy but I will be scheduling an echocardiogram for him soon. Although he had one when all the other stuff was happening and he was deemed okay, I want to make sure that nothing has deteriorated since. He still has occasional joint pain and I am afraid he may always have some RF related problems.

  28. Debbie said,

    August 28, 2014 at 2:52 pm

    At least you have dound doct

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    January 2, 2015 at 7:48 pm

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  30. tovahome1960@yahoo.com said,

    May 4, 2015 at 11:51 pm

    I hope all is okay. RF doesn’t always cause heart complications. Has your son had the cunningham panel? might be helpful to you. it’s $1000 but if you have a PANDAS doctor, or someone who will prescribe the panel, insurance will usually cover most of it. There is definitely genetic RF susceptibility. RF used to be highly prevalent and yet some were never affected before strep was treated. There are many autoimmune issues that can cause joint and fever flare ups so its critical to have a rheumatologist involved. Honestly, if there’s strong suspicion of RF my opinion as a nurse is that you should be on prophylactic abx for a duration.

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