PANDAS: Muddying the Waters of Autism

15 Aug

I don’t cover a lot of things as a parent because, because it is harder for me to spot drama there. That’s not to say we don’t have episodes, because we do. All the time.

Thomas and Percy are typical siblings in many ways. They do fuss, argue, fight and tease each other as 7 and 4 year-olds might be prone to do. Percy might be described as the more “typical” of the two, because he is relatively trouble-free and compliant. I think he’ll be dropped from special education within a year or so.

Thomas is a different sort altogether. He requires constant diligence. I’m talking ALL. THE. TIME. He needs to be watched almost every single moment of his waking hours. And that is not small thing when he gets up at 5:30 most mornings. He mostly gets into things. He has always had a thing for getting into the refrigerator. He likes to look over the pantry when it isn’t locked. But by far, his biggest thing is water. Water, water everywhere! He’ll spend gobs of time in the bathroom playing in the sink, washing his wooden trains. Wood and water don’t go so well together. In any case, he’ll also get into the soap, toothpaste, shampoo or whatever he gets his hands on and makes a huge, gigantic mess. Stuff is everywhere!

The other day during Sunday school, he snuck out and into the bathroom, getting the front of his shirt all wet. In church, i was about ready to take him outside, which I have had to do the last couple of Sundays. In fact, it has been intense with Thomas all summer long.

He has tested positive for strep throat several times this summer. Jane has begun correlating his more difficult behaviors with possible infection and she has been right several times. The maddening thing about this, is that he has no other apparent symptoms! Jane started taking him in to the doctor last year when his behavior was getting too bad and the strep screen was positive almost every time. He would undergo a 10 day course of antibiotics and be okay for a bit, but a few weeks later it was all back again. It was absolutely crazy, because he didn’t complain of a sore throat, he had no fever and only occasionally had swollen adenoids. I was beginning to suspect that maybe the screening was all fouled up. They did some cultures, and these showed up normal.

I also admit to wondering if Jane and the pediatrician were both going loony. I have never heard of asymptomatic strep whose only marker was increased behavior difficulty. This is not the sort of antecedent most behaviorists look for when doing a proper analysis. But there appeared to be some correlation, nonetheless. Jane took Thomas to an ENT to discuss the possibility of having Thomas’ tonsils removed. The ENT did not recommend this and is the one who gave Jane the name to pin on this anomaly: PANDAS. I had never heard of it, either. Apparently there is something to it and the NIMH is looking into this apparent OCD/autism/strep connection. I’m still skeptical, but not as much as if I hadn’t witnessed this sort of thing with my own eyes. Thomas has been diagnosed and treated for strep at least 3 times in the last 9 weeks. Percy had it once, Jane had it once and I probably had it once back in June. Back when I did my bus physical in July, I had them do a screen on me and it turned out negative. The ENT seems to think Thomas is some sort of carrier but isn’t certain exactly what to make of it. Thomas tested all normal yesterday, so at least we have a NORMAL result on something!

As if autism didn’t have enough baggage attached, with digestive disorders, neurological disorders, immunity disorders, allergies…there seems to be some sort of other mystery illness to tack on to the list. Like all the others it seems to defy explanation and reason. Like the other things, it is difficult to see and identify. Like the other things, there are correlations and links that are not clear. Like the other things, there is no simple treatment or preventative.  I’ve just learned about the existence of PANDAS and am already sick of it!

This is probably another reason why I blog infrequently about stuff with the boys. It’s harder to be a half-way objective observer/commenter/participant when it’s your own child. There are feelings attached to everything I do, but with the boys it is sometimes too near to be able to focus. I know other parent bloggers who do it a lot better than I do so I prefer to let them tell that side of the story while I focus on the little universe of those with severe and profound disabilities and those of us caring for them. Being their teacher is sometimes difficult, but being their parent would be infinitely more challenging. So being a teacher allows me some semblance of detachment from the parent life, although neither teacher-life nor parent-life are ever far from me.

8-17-2010 update: Here’s a video of a doctor talking about PANDAS:

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10 Responses to “PANDAS: Muddying the Waters of Autism”

  1. Anonymous September 1, 2006 at 10:02 am #

    I had a son who had several years of strep throat every few weeks, including 3 cases of Scarlet Fever. Treat it aggressively (ask for 14 days of antibiotics instead of 10), and throw out and replace everybody’s toothbrush after the 2nd day of antibiotics (when he should no longer be contagious), so that he doesn’t reinfect himself or one of you. He may not be the “carryer” – his brother or parents may be, so you may want to have all of you tested for strep whenever one of you comes down with it.

    My son didn’t have PANDAS, but I did see behaviour changes, particularly aggressiveness, right before he would be diagnosed with strep.

    Good luck.

  2. Dick September 1, 2006 at 2:21 pm #

    doh!

    You know what? I had never even thought of the toothbrush being a source of reinfection, but there it is!

    Thanks for the tip!

    dick

  3. Eric March 5, 2007 at 11:30 am #

    Amy Yasko has developed a protocol, and she discusses strep as being a significant link in the chain. Just one more avenue for autism treatment, we can follow.

  4. Janet May 23, 2007 at 7:43 pm #

    I am going through the same exact thing with my 5yo right now. It is driving me crazy!!! I really need some help – what to do.
    He’s tested positive for strep at least 4 times, in the past few months. I’m pretty sure he is a strep carrier and I’m pretty sure he has PANDAS, although the docs look at me funny when I say that.
    He tested + last Tuesday, was on Zithromax for 5 days. His behavior started to regress again yesterday and is really bad today. Whatever he has was helped with the antibiotic at least temporarily.
    Has anyone tried to get rid of strep with olive leaf extract?

  5. Dick May 24, 2007 at 6:44 am #

    Thomas did get his tonsils removed last fall, a few months after this post. Apparently that did the trick, as we have not had the strep stuff near as much since then. It was the intervention of last resort and I don’t regret trying antibiotics and other things first, but it just got to the point where we had to get more aggressive. A good ENT is critical, and we had one who was skilled. PANDAS is one of those things that is sort of like “leaky gut” or the chronic yeast — it’s a bit of a mystery and very shady, scientifically speaking. I’m still coutious about it such that this is probably the only post I’ll probably ever do about it.

    Good luck!

    dick

  6. David December 9, 2008 at 11:39 pm #

    I am working with a pediatrician in NYC to try to find the definitive link between antibiotics treatment and reversal neurological symptoms. She has found that although Zithromax is not the best drug for strep, it is the best at clearing up PANDAS symptoms. She has had a few PANDAS cases where children were quite psychotic and a few days of Zithromax gave a lot of relief. They were then put on antibiotic (zithromax) prophylactics.
    If anyone can help me out, I am looking for doctors or parents who have noted that zithromax works best for treatment of PANDAS so we can publish it. She has found that PANDAS also includes a spectrum of neurological problems, not just OCD. Any point on that too will be appreciated.

  7. BC December 28, 2008 at 11:14 am #

    My son was diagnosed with PANDAS less than a year ago. I was fortunate to find a doctor that tested his strep titers even though he has never had a case of strep except for a tiny blister he had on his stomach when he was a baby. It appears that whenever my son is exposed to step he begins experiencing anxiety, hyperactivity, vocal tics and speech problems. All he has to do is be exposed. He is currently on zithromax and he has improved greatly. He is able to speak and organize his thoughts where two weeks ago, he could barely get out a sentence. My son also almost NEVER gets sick. Since he was 2 (he is now 9), he has had one unexplained virus and one stomach virus that lasted one day. That’s it. We believe that he has a highly charged immune system that keeps him from becoming ill.

  8. Jena January 19, 2009 at 9:38 pm #

    David – There are many parents on the http://www.latitudes.org/forum for PANDAS who have used Zithromax and may be helpful to you. We used it with success for 2 1/2 years to treat our son’s PANDAS episodes. It stopped working for him in the FALL of 2008 and he’s been on a prophylactic dose of Ceftin since then. We have IVIG scheduled for later this week.

  9. Sarah DeYoung February 17, 2009 at 10:05 pm #

    Sarah-February 17, 2009
    Okay. We just got results back today. My 10 year old (who has aspergers) tested positive for this PANDAS mystery. I asked for the test trying to seek an answer for rolls of explosive reactions to seemingly minor disappointments and frustration. We’re working with a great doctor and eager to hear his suggestions. Question: I had chronic fatigue syndrome for several years prior to my pregnancy with. Many strep-like symptoms plus body pain, and major sleep disturbances. Symptoms would ebb and flow with cold-like viruses I would get. It all went away as soon as I got pregnant with Russell. I’ve heard that there is a high rate of auto-immune illnesses with moms of kids with Autism. Is chronic fatigue syndrome strongly connected with PANDAS? Could it really be all strep related? Just curious.

  10. Daniel Dage February 21, 2009 at 11:13 pm #

    Wait, wait…tested positive? PANDAS doesn’t have any real definitive tests to diagnose. A person can test positive for Strep but PANDAS also involves some behavioral aspects and the etiology is not very well known, understood nor even that widely accepted in the medical community. However, some doctors may make such a diagnosis and try treating it as, Jena mentioned, with prophylactic antibiotics. While it is being studied, the mechanisms and connections are not well known. Remember, AUTISM is not even that well understood!! I would not necessarily make the connection with chronic fatigue syndrome, as the etiology there is different. Strep is the one single thing that makes PANDAS what it is. Individuals with autism also seem to suffer from a myriad of other autoimmune difficulties linking them to various allergies. When my 10 year-old has lots of meltdowns, his mother will often take him in to be tested for strep. Maybe half the time he tests positive. Half the time he doesn’t. It’s a crap shoot. Sorry, not a lot of answers here. But you know you’re not the only one wondering about it!

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