She’s Not Crazy: My Daughter’s Struggle with PANDAS

Three years ago, I lost my daughter to a medical mystery. Since then, I’ve come to mark time as before and after her fall into excruciating madness.

It started with a phone call from her grandmother. My seven-year-old daughter was visiting her grandparents in North Carolina for the Fourth of July. She was enjoying the time with her extended family but had developed a rash in her vaginal area that crept down her inner thighs, causing her some discomfort. The Urgent Care doctor had diagnosed it as contact dermatitis and prescribed a cream to be applied for a few days. With daily use of the cream, a bit more haste removing her wet swimsuit, and some vigilance about rinsing off after playing in the pools and tubing in the rivers, Sophie’s rash cleared up.

Something was different, though. Very different. According to Grammy, Sophie wouldn’t stop wiping after she urinated. She had this alarming feeling of constant wetness that persisted despite the ferocity and frequency of her wiping. She was desperate to feel dry. Snowball-sized piles of toilet paper spilled out of the bathroom trashcan. Flushing the paper invoked a secondary concern that the toilet would clog and overflow. Screams and tears erupted in equal measure as she fought and lost to the compulsion over and over and over again.

Brainstorming over the phone, Grammy and I questioned if, despite no burning or stinging, it was a urinary tract infection; or perhaps an allergic reaction to the topical medicine. When she was younger Sophie did experience some vexing sensory issues. At the time, I thought her insistence on soft pants and particular socks and shoes were a continuation of her toddler stubbornness and a sign of her growing independence. She was a very temperamental toddler known for her fits of outrage. By Kindergarten she had settled into her funny, bright, outgoing self. Her current behavior seemed worlds away from the terrible twos, yet oddly linked. I was panicked and worried but also sure that, like many other childhood phases, this too would pass.

By the time she returned to Texas, persistent OCD and a mishmash of sensory issues peppered her days. Horse camp with her cousin became a quagmire of too-tight ponytails and unbearable shoes. On a trip to the Blue Hole in Wimberley, leaving the water and walking on the grass provoked an immediate return to the water to rinse her feet. Clean, dirty, clean, dirty—she was stuck in a loop of repetitive behavior. Her inability to stop her march from the water to the grass caused intense agony and fear in Sophie. Once she moved past the offending sensation, however, she seemed able to carry on with her day. Ponytail secured, boots on, she enjoyed her horse lessons and the culminating show on the last day of camp. Feet cleaned, she happily swung from the rope swings into the shockingly cold swimming hole.

Her agitation waxed and waned throughout July as other odd behaviors started to emerge. A couple of phone calls to her pediatrician’s office begging for a sick child appointment were discouraging. The front desk gatekeepers, upon hearing a description of her symptoms, assured me she would need to be seen by a psychiatrist or a psychologist. The mental health providers I contacted couldn’t see her for months. My child was weirdly sick and needed help.

I have an MA in counseling, and something about my own daughter’s quick descent into OCD was different than anything I had studied. Many kids have sensory issues and can certainly develop OCD, but it was the abrupt change in Sophie that was baffling. How does your child peacefully go to sleep one night and wake up the next day terrorized? It just didn’t make sense. A quick Google search gave me some much-needed hope. Typing in the terms “acute onset pediatric OCD” returned the oddest information.

References to PANS (Pediatric Acute Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) filled my computer screen. The words “abrupt,” “sudden,” “acute,” and “dramatic onset” caught my attention on the Pandas Network website.

According to the Pandas Network PANS/PANDA fact sheet:

A diagnosis of PANS (or PANDAS) means a child has had a sudden, acute onset in multiple neuropsychiatric domains and the trigger is derived from a misdirected immune response to streptococcus or other bacterial, viral, environmental or immune dysfunction.

The non-profit, PANDAS/PANS Advocacy and Support, answered the question “what is PANDAS/PANS?” as follows:

Illnesses including strep throat, mononucleosis, and pneumonia can suddenly bring on a complicated disorder with symptoms such as:

  • Sudden personality changes
  • Obsessions/compulsions
  • Motor and/or vocal tics/choreiform movements
  • Generalized anxiety/emotional lability
  • Oppositional defiance/rages
  • Bedtime fears/rituals
  • Separation anxiety/school phobia
  • Sensory issues, including issues with food and/or anorexia
  • Deterioration in handwriting or math skills
  • Daytime urinary frequency
  • Hyperactivity

The discovery of this information prompted an immediate phone call to the pediatrician and a request for a sick child appointment. To bypass the front desk screening process, I lied and said Sophie had a sore throat. She got in that day.

I was tripping over my words trying to explain to the pediatrician that my daughter did not have a sore throat but had experienced these bizarre behavioral changes when she interrupted me, “PANDAS. This sounds like PANDAS.” Simply put, in PANDAS/PANS, antibodies made in response to an infectious trigger mistakenly attack healthy brain tissue, causing a host of neuropsychiatric symptoms.

Sophie tested positive for strep on the 48-hour throat culture, and her blood work showed elevated strep titers indicating her immune system had recently staged a response to strep bacteria. She had PANDAS. We had an explanation for her behavior. My daughter was not in the midst of a psychiatric breakdown. Her rash earlier in the summer was the likely culprit.

The recommended treatment for PANDAS is straightforward but complicated at the same time. Treatment is designed to fight the infection, reduce inflammation, and rebuild the immune system. Antibiotics, ibuprofen, and counseling to address lingering OCD issues provide relief for kids with mild to moderate symptoms. Steroid bursts, Immunoglobulin therapy, and psycho-pharmaceuticals may also be recommended.

Sophie, unfortunately, got worse before she got better. She wore the same shirt to school for two months: a dove gray T-shirt, ironically, with a smiley face plastered on the front. Her doctor wrote her a note so she could wear flip flops instead of tennis shoes. She began to line up everything and write and erase her homework over and over again because her handwriting wasn’t perfect. The excessive wiping continued. My sweet, little love bug began to rage, randomly punching me. She decided her older brother was infected and had to shower if he touched her or any of her things. The school made accommodations for her many tardies and missing homework assignments. It was torture for everyone. Not only was she mentally and emotionally haunted, she also felt like a freak around her classmates.

I will always be thankful for our local pediatrician. She got us kick-started in the right direction. Two weeks of antibiotics wasn’t enough for Sophie, so we looked for additional help. A specialist on the East Coast recommended additional blood work and, eventually, hit on the right combination of antibiotics for the right length of time. (Some doctors recommend years of prophylaxis antibiotics to ward off repeat infections.) All in all, Sophie was back to 95% percent herself by early November. After months of debilitating OCD and full-throttled anxiety attacks, my Sophie was better.

Like many autoimmune disorders, PANDAS has a relapsing and remitting course. Over the last three years, Sophie has had several minor flare-ups—a reemergence of her symptoms we’ve treated with three-week courses of antibiotics. We are currently in what I would call a full-blown relapse. In January of this year, Sophie was exposed to three different people with strep within a two-day period. She doesn’t get physically sick—she hasn’t run a fever or had a cough or cold in years. I know Sophie’s sick by the abnormal behavior that rears its nasty head.

Sophie went from performing as Wendy in Peter Pan Junior in December—memorizing lines, belting out songs, maintaining an aggressive rehearsal and performing schedule—to withdrawing from fifth grade this spring, beaten down by anxiety attacks and afraid to leave her mother. The harrowing anxiety is hardest for her; for me, it’s the rage that carves a hole in my guts. She’s progressed from a strictly PANDAS diagnosis to a more general PANS category, as she is fighting more than strep. Two of her physicians recommend IVIG (Intravenous Immunoglobulin Therapy), but insurance considers it experimental. PANDAS is not considered a settled issue in the medical community, but the National Institute of Mental Health continues to publish compelling research results. For now, at $10,000 a pop, IVIG is a treatment of last resort for us. We have a few more arrows in our quiver before we start tapping college funds.   

Although she is still suffering, she is one of the lucky ones. We had a solid diagnosis and treatment fairly soon after onset. I’ve spoken to so many parents whose path was not nearly as straightforward as ours. It can take years to find the right doctor, the right diagnosis, and the right treatment. Psychiatric hospitalizations are not uncommon, neither is homeschooling. I truly wonder how many children diagnosed with mental disorders have treatable medical problems. It’s way past time we accept that the brain is part of the body, that the mental and physical are obviously linked. It’s my hope that emotional and behavioral interventions routinely include complete medical evaluations.        

I’m still hopeful for my own daughter. Her fortitude is cracked and her spirit is wounded, but she still knows how to fight. I fight with her and for her. Together, we mourn the before but know that the after is full of the promise of easier days.  

For more information on PANDAS, visit pandasnetwork.org. Several Facebook groups also offer great advice and support including PANDAS PARENTS and PANDAS/PANS-Texas. For information on a support group in San Antonio, contact me directly by commenting below.

24 Responses to She’s Not Crazy: My Daughter’s Struggle with PANDAS

  1. Maribeth DiPietro October 4, 2017 at 4:35 pm #

    You have written the story of my 7 yr old granddaughter!!!! She got a rash while exploring a cactus! She was put on prednisone and became impossible to deal with, e.g., swearing crying, raging! Fortunately, I read an article in Worcester Magazine by a friend whose son had PANS. You can Google it! We were able to get into tis woman’s doctors! My granddaughter had a very high ASO and is being treated. We live in Massachusetts! So many similar stories!

  2. Malia Hill October 3, 2017 at 9:49 am #

    Hello. I’m a writer for Dearly.com. Would you be willing to comment for an article about PANDAS? If so, please let me know how to contact you or email me at malia [at] dearly.com. Thank you!

  3. Crystal Mendez September 29, 2017 at 8:50 pm #

    I’m a mom and a nurse. I didn’t even know about PANDAS/PANS, how terrifying. Thank you for sharing your story. I’m glad I read this tonight!

  4. Melissa Spence September 29, 2017 at 8:36 am #

    Wow your daughter’s story is so similar to my daughter’s. http://pansawareness.blogspot.com/2013/03/madelines-story.html?m=1
    We live in central Texas too! Thankfully our pediatrician knew about PANDAS and treated her. She also got on board a pediatric psychiatrist and neurologist in Austin that have diagnosed kids with PANDAS. We battled several years of bouts of steel throat and severe sinus infections. Luckily we were able to get on top of it always and treat with antibiotics. Now that she has gone through puberty her pediatrician and I believe she’s outgrowing the PANDAS symptoms.

    • Melissa Spence September 29, 2017 at 8:38 am #

      Whoops typo *strep throat… not steel 😉

  5. Lisa September 28, 2017 at 12:30 pm #

    If known, please provide me support groups and Pandas knowledgeable doctors in the San Antonio, Texas area. Most doctors are not familiar with PANDAS and teachers are also not educated on this diagnosis. Well wishes to Sophie. I pray everyday for my granddaughter that she too will overcome this.

    • Sandy October 3, 2017 at 12:49 am #

      Hi, I’ve found that with autoimmune disease, it often helps to remove inflammatory irritants from the child’s environment and items that trigger the body’s immune system. Complete removal of gluten and dairy from the diet for several months (and years) has helped. There has been a lot written on this by various experts, and I believe a change in diet and lifestyle could have powerful effects on reducing the frequency and duration of relapses in your daughter.

      I’ve included a link here on the idea, but please do contact me if you want more information or have any questions (there are personal details that I wouldn’t want to share on a public blog).

      http://drhyman.com/blog/2010/10/09/is-there-a-cure-for-autoimmune-disease/

      • Lisa
        Lisa October 3, 2017 at 11:19 am #

        For sure. Soph is (supposed to be) gluten and dairy free. We try our best but slip up occasionally.

    • Lisa
      Lisa October 3, 2017 at 11:14 am #

      Were you able to get on the San Antonio FB page? If not, find me on FB and I’ll help with resources.

  6. Amanda Brown September 28, 2017 at 10:39 am #

    You have inadvertently written an accurate story of my daughter, Alissa. Her symptoms started at age 3…. abrupt and overnight. She is 10 now. It wasn’t until last year when my daughter developed TICS and extremely high levels of strep in her blood that I finally got her pediatrician to diagnose her with PANDAS. I want to help make more people aware. It’s absolutely awfu!

  7. Kim September 28, 2017 at 1:10 am #

    I am in Austin and spent all of 2016 helping my 16 year old son get diagnosed and treated for PANDAS. We currently see Dr. Rao in Plano. I would love to connect with other parents in the central Texas area for support and information sharing.

    • Robert September 28, 2017 at 8:14 pm #

      Hello Kim,
      We are in Pflugerville. 15yo son PANS onset 11/26/2016. Diagnosed in March 2017. Still not good despite great doc’s in Austin and Houston. Has been up and down. Down for last 2 weeks. Back to hospital soon I think. We tried IVIG twice at Texas Children’s hospital but had anaphylactic reactions both times. Still looking for something that will work. Still No proof or ID of infectious source yet.. no fun. Willing to share experience and knowledge/ data collected so far, might help.

  8. Lisa Swint
    Lisa Swint September 27, 2017 at 2:05 pm #

    https://www.facebook.com/groups/1722830928047559/

    Great local support group!

  9. Caden September 27, 2017 at 1:48 pm #

    WOW!!! How do we get this article out there more, does Scary Mommy take nominations?!?! This IS so GOOD and INFORMATIVE!!! I don’t know what I would have done! I’m so happy that the doctor finally saw you and I’m so happy that your little girl got better!!

  10. Mary September 27, 2017 at 12:46 pm #

    My Sophia is a PANDAS kiddo. Her onset was brutal and horrifying. I so appreciate this blog post and you’re being so vulnerable. This life is a crazy one but I wouldn’t trade the friendships with other moms I’ve made along the way. These parents are fiercely fighting for their kids. I love you all.

  11. Robert M. September 27, 2017 at 12:30 pm #

    When reading this post, it is as if it was written about my daughter.

  12. LuAnn September 27, 2017 at 11:07 am #

    Thanks for this. I know it’s not easy to share about this struggle. We’re in the same battle. I, too, wonder how many children have undiagnosed PANS/PANDAS.

    • Lisa Swint
      Lisa Swint September 27, 2017 at 1:04 pm #

      It is such a battle and I don’t think the same weapons work for each child!

  13. Desiree September 27, 2017 at 10:47 am #

    I could have written this post myself because it is almost EXACTLY our story with our son. After over a year of being treated and looked at as having crazy pants on by doctors, teachers, etc., and not to mention my poor son being judged and ostrasized by his overnight onset of symptoms by his peers, we too finally got a PANS diagnosis. When I took him in this summer to his ped. with no other symptoms other than behavioral ones and requested a strep test, his doct originally resisted and acted like PANS was quackery. Im glad he reluctantly ran the test and low and behold our son was positive for strep. Hes now been on ariz every other day for several months and I type this with tears in my eyes, he’s now the child hes meant to be. Hes creative, calm, happy, and enjoying life! How many other children out there are being misdiagnosed and not receiving the treatment they need? It keeps me up some nights this thought. Thank you for this post. We are in San Antonio as well and Id love info about the support group!

    • Mary September 27, 2017 at 12:48 pm #

      I’m Mary Dunn Coop on FB. Add me and I’ll add you to the group. Im in SA too.

  14. Morena September 27, 2017 at 9:41 am #

    Much love and hugs to you and Sophie. ❤️ You have both tackled an incredibly difficult situation head on, and I admire both of yours strength and positive attitude.

    • Lisa Swint
      Lisa Swint September 27, 2017 at 1:05 pm #

      Thanks friend! She’s a champ!

  15. Des C. September 27, 2017 at 9:38 am #

    I could have written this post myself because it is almost EXACTLY our story with our son. After over a year of being treated and looked at as having crazy pants on by doctors, teachers, etc., and not to mention my poor son being judged and ostrasized by his overnight onset of symptoms by his peers, we too finally got a PANS diagnosis. When I took him in this summer to his ped. with no other symptoms other than behavioral ones and requested a strep test, his doc originally resisted and acted like PANS was quackery. Im glad he reluctantly ran the test and low and behold our son was positive for strep. Hes now been on ariz every other day for several months and I type this with tears in my eyes, he’s now the child hes meant to be. Hes creative, calm, happy, and enjoying life! How many other children out there are being misdiagnosed and not receiving the treatment they need? It keeps me up some nights this thought. Thank you for this post; the more ingo out there about PANS/PANDAS the better! We are in San Antonio as well and Id love info about the support group!

    • Lisa swint
      Lisa swint September 27, 2017 at 1:32 pm #

      Local group for PANDAS/PANS. Lyme coinfections are also covered.

      https://www.facebook.com/groups/1722830928047559/

      It’s a terrifying illness! My poor love had an over the top panic attack while on a school field trip. She felt like a total freak. I’m so glad your son is getting better. What a feeling to have your kid back!