PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

So Many Popsicles

My breakfast, lunch, and dinner!

When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.

Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.

Sadly, more often than not, telling a doctor you have PANDAS is just asking to be laughed at and dismissed. Many doctors don’t believe in PANDAS (let alone the newer term PANS) because they’re unaware of the growing research and evidence, and others don’t know enough to take it seriously.

Most doctors, if they believe PANDAS/PANS exists at all, assume it is extremely rare and only presents in a young child as an obvious, overnight onset of OCD. This is certainly the most common presentation, but according to Dr. Swedo, the idea that PANDAS only exists in prepubescent children was an arbitrary distinction for the original study. Still, in the minds of most doctors, to have me, a twenty-year-old, say I have this obscure pediatric disorder is preposterous (never mind that it started before I hit puberty).

While my case being dropped by the first doctor seemed like a bad sign, when I met with the new doctor at my appointment, he knew more about PANDAS than most and actually agreed to do the surgery after I told my story and explained the severity of my symptoms.

So that’s how I found myself last week trustingly lying in an operating room at the same hospital that had failed me so many other times over the years.

This was the hospital that discharged me from the ER last summer without a single test when I suddenly had severe chorea movements. This was the hospital whose neurologists had said PANDAS was “too poorly understood” to be considered as an explanation for my rapid decline. This was the hospital whose psychologists completely missed my severe OCD when I was twelve. Disturbingly, this was also the hospital consistently ranked as one of the best in the nation.

But last week, the hospital redeemed itself to me.

As I waited in the pre-op room, sniffing, grunting, and twitching involuntarily from my latest tics, I actually felt as though everyone not only believed me, but actually wanted to help me. I usually feel like I have to fight for every little bit of care I get, but this time, they were fighting for me. This time, I didn’t have to partially cover up my diagnosis by only saying I have Autoimmune Encephalitis (but not PANS). Everyone knew my full diagnosis, but they were all-the-more eager to help.

My operating room was crowded with residents, interns, and medical school students trying to get a look at this unusual creature—this real, live PANDA bear—because they saw that we exist outside of a “theoretical disease” briefly mentioned in their textbooks. There were whispers of my case in the halls—not because they were mocking my diagnosis as usual, but because they were fascinated. These young doctors genuinely wanted to learn about PANDAS/PANS so that someday, they could perhaps know how to treat their own patients with the disorder.

For the first time, doctors at a regular hospital were giving my illness the attention it deserves—and giving me the treatment I needed.

If there’s one word I felt to describe the day, it would be “hope.” I felt hope because more doctors finally believed in my disease. I felt hope that someday, other PANDA’s from my hometown wouldn’t have to travel to out-of-town specialists for treatment—someday our own “world-class” hospital might treat more of us. Most of all, I felt hope that I had finally found the treatment that would bring me back the rest of the way…

Ever since I came out of surgery, I haven’t had a single tic.  The day before, I’d developed two new vocal tics that got more and more disruptive as the day went on.  I know—tics usually increase with anxiety.  But why have I also found myself suddenly carrying out fewer and fewer compulsions this week—and not getting extremely anxious over not doing them?

As always, there are a lot of variables at work.  Still, I can’t deny that, aside from a sore, gnarly-looking throat and fatigue from leftover anesthesia, I’m feeling great in every other way.  (And I’m not in nearly as much pain as people tried to scare me into thinking I’d be in.)  To me, what happened this week is a good enough reason to keep hoping for continuing progress.

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Comments on: "Tonsillectomy and… Hope?" (17)

  1. […] through three high-dose IVIG treatments as well as eight low-dose IVIG infusions. I’ve endured tonsil/adenoidectomy, over a year of steroids, month after month of antibiotics, and countless therapy sessions. […]

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  2. […] already made huge progress. Plus, my doctor says she’s finding IVIG to be more effective when you don’t have tonsils/adenoids like I […]

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  3. Thank you for your website. You are helping so many people! My 30 yr old son just was diagnosed 3 weeks ago. We now realize he’s had PANS since he was 2! We had to leave MA and go to Dr. Trifiletti in NJ to find a doctor who would treat him. He can barely walk, he sleeps maybe 3 hours a night and the OCD is through the roof along with rages and terrible anxiety. Where did you find a doctor who could remove your tonsils? He’s had terrible problems with his.

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    • Hi Danielle! I’m glad you like my website, and I’m really glad that your son was finally diagnosed. It’s sadly all-too-common to have to go far away for treatment, but with my tonsillectomy doctor, I got lucky. I actually just called the otolaryngology department at my local hospital to schedule an appointment. On the phone, I just said, “I would like to schedule a consultation, because I think I need to have my tonsils removed.” Plenty of people have obvious tonsillitis, and no one bats an eye at someone saying something like that. Of course, I didn’t say a word about PANDAS on the phone.

      When the consultation came, both of my parents tagged along for reinforcement. We made sure to say “Sydenham’s Chorea” at first, since I’d had the characteristic chorea movements, since Sydenham’s is a version of PANS that isn’t controversial, and since tonsillectomy is sometimes used to treat it. When this was received well, we explained more about PANDAS. I basically told my heartbreaking story and made them feel like they could do something to help me. I underscored the fact that my other treatments for PANDAS had helped (so this was a real disease), but tonsillectomy could be the missing piece. We made sure to reiterate that tonsillectomy has been shown to significantly reduce PANDAS symptoms, if not put people into remission. We gave them the contact information for my specialist as well.

      My doctor was rather young, so I think he was more open to “experimental” treatments, and I honestly think he was fascinated by my case. If I were you, and your specialist has said to have your son’s tonsils removed, I would just keep trying different doctors until someone agrees to do it. Tonsillectomy has been used for Sydenham’s for a long time, so if doctors realize that your son basically has a version of that, they may be more willing to do the surgery. Hope this helps! Let me know if I can do anything else.

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      • How are you feeling in 2017? Do you feel that the tonsilectomy was s huge success? I have had ocd since chilhood, have had many tics, and i do a thing with my muscles where i tense them up on purpose… I had strep 6 times in elementary school. I’ve managed decently through adulthood but recently had strep for the first time in years and my ocd got much worse. I was shocked when i read about the link last year. I would love to hear an update.

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        • Hi Amy, yes, in 2017, I still see the tonsillectomy as a huge success. I had my second high-dose IVIG about four months before the surgery, but the tonsillectomy seemed to be the final blow to PANS. In the weeks and months afterwards, my remaining symptoms died away, and the flare-ups I had were much less frequent and much less severe. About four or five months post-op, despite mild tics and very mild OCD, I had my life back, and PANS had no impact on it. Unfortunately, last March (nine months post-tonsillectomy), I caught Lyme disease and relapsed badly. However, I believe if I hadn’t caught Lyme, I would still be in remission. Since the Lyme relapse, I’ve been fighting my way back, but I seem to be “returning” more quickly so far.

          Have you been able to find a doctor knowledgeable about PANS? Unfortunately, most doctors don’t know enough about PANS to be useful. Pandasnetwork.org has a list of PANS-friendly doctors. A lot of them say they are pediatric doctors, but most still treat adults with PANS, too. Does this help? I wish you all the best, and let me know if I can do anything else for you! 🙂

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          • Hi, where you on any medications. My has been diagnosed with OCD, and acute anxiety disorder. He has tics, has had severe separation anxiety, eating disorders, dilated pupils, etc. He will be 20 years old this year. He is a good student, but suffers socially. I’m afraid to think how he would be without the medications, which he has been on for about 10 years. We noticed issues when he was 1-2 years old. He just read about PANDAS and we are interested in looking into this. Thanks for sharing your story.
            Mike

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  4. […] trust me, it does get better. I haven’t truly experienced the fullness of terror since getting my tonsils out this summer, and I’ve heard so many other recovery […]

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  5. […] one year, a tonsillectomy, and an additional IVIG later, I’d returned—literally and […]

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  6. […] small and healthy before they were removed. Although I’ve been having fewer PANS symptoms since my tonsillectomy, I was incredibly skeptical that there would be any infection found, let alone something as strange […]

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  7. […] first week after my tonsillectomy, after a couple days when the swelling went down, I had no trouble falling asleep because of the […]

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  8. Janet R said:

    I agree with Mary – I don’t know why this post hit me so hard. It just seems to bitter sweet to me that you are finally getting some help. I hope you continue to do better and better as time goes on!

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  9. All good things…..yippee!! So happy to hear things went, and are going, well!

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  10. I have tears rolling down my face…to hear you report that “typical” clinicians did not scoff, did not huff and puff their vitriol at you about whether or not PANDAS/PANS exists (and then share their ignorance with residents and med students)…well, that alone has brought these tears to me eyes…but to hear that the procedure was not as painful as everyone said it would be and then to add that you have had some relief from your symptoms…that isn’t just hope affirming, it goes far beyond hope…right to reassurance that you will be well! You have done so much for your own health and for the health of others as you have brought us along on this journey by sharing it with us here. May your summer be full of healing and hope!

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    • Thanks so much Mary! I’m glad you found my post touching and reassuring. It unfortunately seems to be a universal experience among parents and kids with PANS that we go through many doctors who don’t believe us before we get the care we need. But apparently, it’s not always that way, as I just experienced. I really think that it’s only a matter of time before this disease is more accepted by “mainstream” medicine… And I’m also hoping it’s only a matter of time before the rest of my symptoms go away…

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