Luke’s Successful PANDAS Recovery

Luke’s determined mother wrote this account about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) for ACN Latitudes. The family’s name is withheld on request.

Luke was a typical, very good, happy baby. He achieved all his milestones and was what his pediatrician referred to as a “lark”: early to bed and early to rise. The only physical challenges in his early months were some mild eczema and a persistent case of reflux.

Once he stopped nursing, however, ear infections commenced, and we had trouble keeping up with them; one would end and then another would follow quickly.This pattern continued until, finally, when he was three, we subjected him to a bilateral tympanostomy: tubes in his ears.

After that, the recurrent infections abated and eventually ceased. Luke suffered no measurable hearing loss or speech delays and continued to achieve age-appropriate milestones.

Emotional and Behavioral Issues Surface

From the age of two, however, Luke had become what his dad and I half-jokingly referred to as “high maintenance.” He was sensitive to transitions and disliked spontaneous changes in our family routine. He developed severe separation anxiety, making daycare drop-off a nightmare.

We sought the advice of both a child psychologist and his pediatrician and were told that he was a “highly intelligent, highly sensitive” child, that he might struggle a bit with novelty and transitions, but that he would eventually “grow out of it.”

Through kindergarten and into the opening months of first grade, his sensitivity and quirkiness continued, but he fared well in the care of warm, engaging teachers. He was a typical, physically healthy boy — seemingly immune from the multitude of colds, viruses, and other illnesses that swept through his school. In winter months, he would invariably bring home at least one form letter every two or three weeks, warning us that another child in his class had come down with strep.

Luke never had so much as a scratchy throat, but his dad or I would come down with a full-blown case of strep throat within ten days of receiving one of those letters. We began to think Luke might be a “carrier,” but he didn’t seem to suffer any ill effects, so we didn’t seek any treatment for him.

A few months into his first-grade year, however, I began to notice that Luke washed his hands constantly, to the point that the skin became red and raw. We sought professional advice, and Luke was diagnosed with obsessive compulsive disorder (OCD).

Could it be PANDAS?

In researching pediatric OCD on the web, I came across a few references to PANDAS and carried that information to his pediatrician and therapist. Both responded that 1) PANDAS was controversial and not generally supported by the medical community, 2) Luke had never displayed any signs of strep, and 3) even if strep was behind Luke’s OCD, the fact was that now Luke had OCD, and the only treatments for it were the traditional responses, including cognitive behavior therapy and, if necessary, conventional antidepressant medications.

Luke responded well to Cognitive Behavior Therapy for over a year, and we all thought we had “a handle” on the OCD through therapy alone; no medication had been required. But in February of his second-grade year, shortly after another “strep letter” came home from the school, Luke dropped into a new abyss of deeper, more troubling anxiety and OCD.

He begged not to go to school every day. He “forgot” how to read. His handwriting became illegible. The therapist recommended a psychiatrist, and the psychiatrist recommended conventional antidepressants.

I did more research, and now even more information regarding PANDAS popped up on my computer screen. I took it to the therapist, psychiatrist, and pediatrician but was again waved off. So this time, I took it a step further and told a white lie: I told the pediatrician that I knew Luke had been exposed to strep and I was concerned that he had it, even though he wasn’t complaining about a sore throat.

When they took a culture and it came back negative, I thought I had exhausted the PANDAS line of inquiry. My son had “regular OCD.”

Luke was prescribed a low-dose SSRI antidepressant, Lexapro. He had several rocky and difficult months, but by about May of that year, he seemed to be more or less back to normal. He remained physically and mentally healthy until four years later, approximately two weeks after we received the one and only “strep letter” we were to see during his middle-school years.

His deterioration began with increased irritability, high anxiety, and trouble sleeping. The decline escalated until he had a panic attack that Fourth of July weekend that sent us to the ER. The psychiatrist began transitioning him to different SSRIs and different dosages and even encouraged us to add an anti-psychotic to “calm him down.”

But none of these interventions resulted in any positive changes, and they seemed, instead, to contribute to Luke’s decline.

Finding the Help We Needed

By September we had pulled him out of school; he couldn’t stay in class because of his anxiety. He’d become completely nonfunctional within five months.

I came across Beth Maloney’s book, Saving Sammy: Curing the Boy Who Caught OCD, in the bookstore during one of my “haunts” — brief excursions looking for new information or ideas on how to help Luke. I read the book in one night and became convinced, again, that strep was behind Luke’s recent decline.

I emailed Beth, and she responded with the names of the blood tests I should request. The next day, I called the psychiatrist and demanded that he give us an order for these tests at the hospital lab; the doctor was reluctant but finally yielded to my pressing.

The next day the results were in, and Luke’s strep titer level was more than five times the lab’s high end of the “normal” range. That was enough information for me to press for treatment with his pediatrician. Using Sammy Maloney’s journey as our guide, she prescribed Augmentin XR. Within 48 hours, the change in Luke was palpable.

He came downstairs and shared dinner with his dad and me at the dining room table for the first time in more than three months. This was the beginning of our official PANDAS journey.

How Luke is Doing Today

Luke continued to take Augmentin XR for nearly two years as he slowly and steadily improved. He returned to school with the assistance of an individual educational plan (IEP), which grants him accommodations such as extended time for assessments and assignments. He continued with cognitive behavior therapy, this time focusing especially on a type of therapy known as exposure and response prevention (ERP), to combat the more persistent OCD behaviors.

We’ve found that antihistamines are effective for controlling not just his eczema and allergy symptoms but also the “fight or flight” anxiety responses. We use n-acetylcysteine (NAC), B6, and zinc for additional neuro-support. He continues to take a low-dose SSRI, Zoloft, as well, though the plan is to transition him off this medication once he’s had a lengthy period of subclinical stability with respect to his OCD behaviors.

Today, Luke is a happy, healthy 16-year-old, attending school full time, embracing a hefty load of honors and AP classes, hanging out with friends, and dabbling in computer programming and graphic design. He checks in with his ERP therapist about once a month and talks almost incessantly about his plans for college.

I shudder to think where he might be today had we not found the PANDAS community on the ACN Latitudes forum and its support and resources!