When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.
Today, I can say with confidence that the kitchen sink worked for me, because I’m back in school and thriving, with only mild difficulties.
So many of you have asked me what exactly I did that got me better—the majority of the emails I receive from readers are questions about my treatments. Because of this, I’ve decided to do a series of posts on the various treatments I’ve used, what they were like, and how I responded (or not). I probably won’t do all the posts consecutively—if something else inspires me on a given week, I’ll interrupt the series.
You see, the problem with treating PANS is that the lack of diagnostic tests makes it impossible to know which treatment will provide the most relief. What worked for me won’t work for someone else. What worked for others didn’t always work for me.
Even worse, nearly all of the treatments available take weeks, if not months, to produce results, so by the time you know something didn’t work, you have to start all over again and hope the next thing you try will do the job. Meanwhile, you’re miserable and hardly yourself because of your plethora of debilitating symptoms. I can’t even begin to express how agonizing the process can be when you’re not making progress, and you’re wondering how much longer until your treatments help you get better—or if you’ll ever get better at all.
Moreover, because of the lack of awareness and the lack of doctors with PANDAS experience, there’s no one to hold your hand through the recovery journey. The PANDAS specialists are overrun with cases and can’t speak to you often enough, and you’re fortunate if you can find a local doctor to simply refill your antibiotics—let alone to provide treatment guidance.
The fact that dozens of parents ask advice from a twenty-year-old with no formal medical training who writes a blog from her dorm room—this tells you everything you need to know about how hungry people are for information, hope, and support when dealing with PANS. On the other hand, there are many things one can learn from a patient that can never be gleaned from cold facts presented in medical journals.
All of this is to say that I’m going to be doing this series to hopefully make the treatment journey less scary for those in the middle of it. I’m not here to suggest any particular methods for others, but I hope by going into more detail about what I did, people might better understand what to expect after having made their own decisions with their doctors.
When my doctor first told me about the “kitchen sink,” I never could’ve imagined how many kinds of treatments I would try before getting completely better. Recovering from PANS is the hardest thing I’ve ever done, but all that matters is that something worked for me—or more likely, several things worked together.
So readers, I hope you’ll come gather round my kitchen sink in these next few posts, and we’ll talk about this treatment and recovery journey that we’re all on together.
2 thoughts on “Treatment Is a Kitchen Sink?”
I’m looking forward to gathering around your kitchen sink. Our son was diagnosed in Aug 2012 after 4 years of misdiagnosis. There has been one of two brief periods of remission but this last relapse, which began in Oct2015 has been a doozie. The docs are throwing the kitchen sick at him! He is currently undergoing IVIG treatment having completed 5 of a series of 6 monthly treatments. Also ongoing antibiotics, steroid boost (made him crazy and rageful), supplements, allergy treatments, etc. The latest prescription is for CellCept which as I understand is an immunosuppressant drug. We haven’t started that yet…IVIG strengthens the immune system and Cellcept is to suppress his immune system…makes no sense to me. It seems if a persons triggers are clear and obvious (I.e. Strep) then treatment is probably more successful but unknown triggers. Make treatment more difficult. Looking forward to learning more about your journey and keeping my fingers crossed that some treatment will help our kids.
Hi Alisa, glad you’re looking forward to my new series! Sounds like your son has been through an awful lot. I hope the CellCept (and the rest of the kitchen sink) brings healing for him. I do think it can be trickier when the trigger is unknown. You don’t know what antibiotics or antivirals to use, and it’s harder to figure out when you’re being exposed to that trigger. I’ve also heard that sometimes, PANS can switch into an autoimmune mode where the immune system continues reacting without a trigger at all. It’s such a beast of an illness, but I’ve heard so many incredible stories that I really do believe there’s hope that everyone can get better.