Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.
Over these months, I’ve tried a variety of antibiotics, including Augmentin XR and Cefdinir, but it was switching to Azithromycin in October that I believe was the final blow to my illness. The few mild symptoms that remain have little effect on my life.
Yet some critics might say that my taking antibiotics for twenty months is reckless—that I’m contributing to antibiotic resistance and an inevitable super-bug apocalypse. But these are the same doctors who will give a six-year-old anti-psychotics without investigating infectious triggers. So who’s the reckless one: the doctor who loads up a kindergartener on Abilify without running diagnostic tests, or the doctor who’s prescribing a year of Azithromycin, knowing it will keep me sane and healthy? Is it reckless to properly treat the underlying cause of a debilitating and potentially life-threatening illness?
Nevertheless, some skeptics argue that antibiotics merely have a placebo effect—that people are seeing a relationship between symptoms and antibiotics that doesn’t exist. But anyone who has PANDAS or who’s lived with a PANDAS child for any length of time may have observed the pattern of improvement with antibiotics over and over again—and knows it would be unscientific to claim these observations as mere coincidence.
But what about antibiotic resistance? What about the fact that antibiotics kill off beneficial gut bacteria? What about yeast infections? If PANDAS is just “sudden-onset pediatric OCD,” why not give kids an SSRI and send them to therapy? Why not treat the tics with some anti-psychotics? Surely long-term antibiotics are unhealthy, right?
If PANS could be effectively treated with therapy and anti-psychotics and SSRI’s alone, the PANS community would settle down and crowd into the offices of mainstream doctors, the kids would get better, and the families would go on thriving. But this isn’t the case. Treating infections is the most crucial part of recovering from PANS, because the infections are what trigger the symptoms in the first place. Any ongoing infections will continually provoke the immune system to create the antibodies that attack the brain and lead to symptoms. Thus, the infections need to be dealt with for healing to occur, and they need to be prevented for it to continue.
As for antibiotic resistance, more than half the antibiotics used in America are for agriculture. We should be worried about all the livestock being given antibiotics for non-therapeutic purposes—not kids with PANDAS who take amoxicillan to stop bad antibodies from attacking their brains. Some people with PANDAS are literally dying. I would argue that they need antibiotics as much as someone with life-threatening bacterial pneumonia, for which no one ever questions the use of antibiotics.
But surely after twenty months of antibiotics, my gut flora is a wreck, isn’t it? Seeing as I’ve never had a yeast infection or diarrhea or nausea during this whole time, I’d say I’m just fine. In fact, I had stomach issues before I started antibiotics that have since resolved. I’m not alone in this—I’ve heard similar reports from many other families. (All this being said, yes, I do take a probiotic everyday—with 30 billion live cultures.)
Antibiotics are a critical part in the healing process of PANS. For some, they may be the only treatment needed. For others, they’re one of many therapies that work together.
If you’re just starting on the road of antibiotic treatment, my best advice would be to realize that it can take time for PANDAS symptoms to die down. In some cases, you get worse before you get better.
Antibiotics are still drugs with risks, and using them shouldn’t be taken lightly. However, with PANDAS, the bigger risk is often to leave the trigger of the disease untreated.
11 thoughts on “Why Antibiotics Are Necessary for PANS”
Thank you so much for sharing your personal experiences on your blog. My 9.5 years old son is on his second year straight of taking antibiotics for PANDAS, it has been a long tough road. I am so grateful for the specialists and researchers who are saving our children. It is so frightening to watch your child suddenly change and become so ill. My son still gets infections which may intensify PANDA symptoms, but if it wasnt for the antibiotics and ibuprofen, I can not imagine the nightmare he would be living in. There is hope and together we can all spread awareness. Big Hugs to all of our special Pans/Pandas kids and parents!
I’m so glad your son is doing better! I can only imagine how awful it is to watch your kid go through this, but it’s such a relief knowing there are treatments that can help people like us and researchers working towards finding a cure. Thanks for helping spread awareness!
Thanks for writing this blog. I am a parent of a 3.5 year old ASD child affected with PANDAS. It’s been a month on Amoxicillin and Potassium Clavulanate. When we started, about 90% of the aggression and anxiety stopped within few days. However, there have been few occasions when the symptoms came back. I was wondering generally how long does one need to continue on antibiotics before completely healing? Is it in months and years?
Hi Amartya, it really depends on a lot of things. Some people who catch it early can do a short course of antibiotics and that’s it. Other people need to be on antibiotics for months before they see improvement. A lot of us end up taking antibiotics for multiple years to keep symptoms from coming back, and many people end up needing other treatments on top of the antibiotics, such as IVIG, steroids, or plasmapheresis. The main thing is to be sure you know what infections and triggers you’re dealing with so you know which drugs will work best. I’d recommend finding an integrative and/or a PANDAS doctor if you haven’t already. There’s a list on pandasnetwork.org. Hopefully you won’t need any more treatments since he’s so young, but it might be good to be in the pipeline in case you do down the road. Good luck!
I’m glad I found your blog. I’m certain my son has PANS and I think I could have it also. You made some really good points about the hypocrisy in the medical profession regarding long term antibiotic use.
Thanks for commenting! I’m glad my blog is helpful. There is so much misunderstanding and misdiagnosis regarding PANS in the medical community. Have you been able to find a doctor to treat you? PANDASNetwork.org has a list here: http://www.pandasnetwork.org/research-resources/us-providers/
Not yet. I asked my son’s pediatrician about it, she tested him for strep, pronounced it “normal” and told me it rules out PANS which I know is not true. Thank you for the link. As for me, imagine going to a Doc and saying, “Um, I started having extreme OCD seemingly overnight when I was 13…” I saw on the list that there are some naturopaths nearby that are familiar with PANS. Money is an issue, so truthfully I have antibiotics on hand and I may try them.
Absolutely! As for antibiotic resistance the whole reason we should decrease how often they’re used for things like agriculture and viral infections is so people who need them, like yourself, can still have them available!
Thank you for commenting! I’m so glad you understand how important antibiotics are for people like me. 🙂 Hope you’re doing well.
So well put. Thank you!!!
You’re welcome! Thanks for commenting.