How We Lost our Son to PANDAS and Brought Him “Home” Again

By Ian’s mother, Nancy

After our son had spent a few exceptionally stressful days in 1st grade, my husband and I noticed his little hands were red and raw. A quick phone consult with his teacher confirmed, “Yes, he seems to be washing his hands a lot.” In fact, he was washing them at every transition of activity in the classroom: between math and reading, between reading and art, between art and gym, and on and on.

This was just the beginning. Ian was six years old when he was diagnosed with obsessive compulsive disorder (OCD).

Seeking help as symptoms progress

We found a clinical psychologist and got him into cognitive behavior therapy (CBT) within days. For just over a year that intervention seemed to meet the bill. Then, in February of his 2nd grade year, his OCD symptoms increased tremendously, within a very short period of time.

Ian had begun that school year well, without any problem behaviors at all, and he was doing well in the most advanced academic groups in his class. Now, though, he essentially “forgot” how to read. He could not complete simple quizzes in the allotted time. He was distracted and generally anxious, and he developed severe separation anxiety.

We were being encouraged by specialists to add psychiatric medications to his OCD therapy but were reluctant. I began doing more research, primarily on the web, and came across the medical term PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). While many of the symptoms seemed to fit, I couldn’t recall Ian having had strep throat.

Shortly, our son brought home a school notice that a case of strep had been identified in his class. Within days I developed a bad case of strep throat! I became convinced Ian was a carrier for the bacterial infection, so I confronted my son’s doctors (both his pediatrician and therapist) and asked about PANDAS. They waved me off and said the condition was unproven and controversial. Their message was that it didn’t matter howor why he had developed OCD; the fact was he had it, and now it needed to be treated in the traditional, psychiatric way.

I pressed and annoyed Ian’s pediatrician until she consented to a throat swab, but when the culture came back negative, it was effectively “case closed.”

Hitting a new low

We agreed to put our son on the antidepressant Lexapro, an SSRI (selective serotonin reuptake inhibitor), and continued CBT off and on over the next few years as his OCD waxed and waned. Ian had good periods and he had tough periods, but we were continually told that this was the nature of OCD.

Then 16 months ago, soon after another notice regarding strep at school came home, Ian began his greatest descent into the depths of OCD ever. Twelve years old, he would sit in his math class with a quiz on his desk in front of him — containing material he knew perfectly — and not answer a single question. He “flipped out” in several classes, melting down when a bit of material was new or frustrating to him, unable to maintain his composure or regain it without adult intervention. We stepped up his therapy schedule and decided to try a new SSRI; perhaps the Lexapro had reached the end of its ability to be effective for him. And we looked forward to summer, thinking that once school was out, he would face less stress overall and have fewer daily triggers to deal with.

But the summer schedule did not improve Ian’s mental condition and he continued to deteriorate. In July he had his first genuine panic attack and it sent us to the emergency room for fear he might have some underlying physical condition that had as yet gone undetected. The hospital ruled out everything but anxiety.

Every day was a battle with his anxiety. Nothing was simple, nothing was joyful. He would not leave the house. We could not go out to eat or to a movie or for a walk because everything outside the home was entirely outside his control and full of triggers for his anxiety and OCD.

We cancelled our summer family vacation. He cried and raged every day, and he couldn’t sleep at night for the obsessive thoughts attacking him without abatement. Ian frequently curled up in a fetal ball on the floor. He repeatedly screamed in anguish, saying, “Make it stop! Make it stop!”

School: a monumental struggle

When school began again in August and he started 7th grade, we approached the staff to warn them that this year would not be like the previous ones. We explained he was in a tough spot now and would likely need an expansion of the accommodations previously provided to him in his 504 Plan. So we worked with the administration to put together an IEP (Individual Educational Plan) for him.

Editor: See this article from the Learning Disabilities Association of America for a thorough explanation of 504 and IEPs for students with special needs.

Ian tried to return to school but it was an abysmal beginning. He could barely make it through a single class period, let alone a full school day. He spent most of his time in the school psychologist’s or dean’s offices, crying and shaking. Every morning he would beg us not to send him back the next day, but we were afraid he would just get more and more school-phobic if we allowed him to stay home, so we kept sending him. Not a day went by that we didn’t get a phone call from someone at the school telling us about Ian’s rough day.

Finally, in October, we pulled him out of his school and enrolled him in an outpatient program at a local hospital for “kids in crisis.” They told us they could help him, but that wasn’t true. They medicated him and dropped him into group therapy sessions with kids who were drug and alcohol abusers, self-harmers, suicidal, and homicidal. He was none of those things, but his OCD grabbed hold of many of those pervasive themes and gave him even more trouble with respect to maintaining his composure and sleeping at night. We were nearing the end of our rope.

Finding answers in a paperback

One rare afternoon of freedom while Ian was at the hospital program, I wandered down the Psychology aisle at our local bookstore, searching for answers and hope. That’s when I came across Beth Maloney’s book Saving Sammy. It changed our lives forever. Like Sammy, Ian had always been asymptomatic for strep. But I came to learn through Beth’s story that just because Ian’s throat culture was negative and he didn’t show symptoms for strep didn’t mean that he wasn’t suffering from a reaction to strep or the strep antibodies nonetheless.

I read the book cover to cover and became convinced that we were dealing with a similar case in our home. There were so many similarities, from Ian’s and Sammy’s “math whiz” status prior to the disorder’s sudden onslaught, to no outward signs of strep, to their age (12) when the PANDAS struck with such great force. I emailed the author Beth and told her a little of our story. She responded with encouragement and the name of the two blood tests I needed to order to demonstrate the presence of a strep infection despite the asymptomatic nature of it.

I pressed the attending psychiatrist at the hospital program to order these blood tests for Ian. She was hesitant and told me (as though I’d not heard it before) that PANDAS was controversial and unproven. But I wouldn’t let up, so she relented and ordered the tests. A blood test that detects antibodies against strep (ASO titers) revealed that Ian’s level was four times the normal range. I’ve subsequently come to understand that these ASO titer blood tests are far from the end-all-be-all of PANDAS diagnostic testing, but they were enough for me to get a toe-hold with Ian’s medical team.

The hospital would not treat him for PANDAS, so I took copies of Saving Sammy to both the psychiatrist’s and pediatrician’s offices with pleas for them to help us. The pediatrician was skeptical but agreed to a course of antibiotics based upon the “do no harm” section of her Hippocratic Oath. She admitted, however, to having no knowledge of a protocol for treatment, so we used the Saving Sammy treatment dose as our basis, at least for the time being.

Antibiotics rescue Ian

Within 48 hours of beginning the antibiotics, Ian’s symptoms took a major turn for the better. Namely, severe contamination fears that had held him captive for months began to subside. Then other symptoms started to improve. We were getting our son back.

He’s now been on antibiotics for about seven months and the improvements continue as we press him to return to his “normal” life, to take on new challenges, to not let his OCD prevent him from being his best 13 year-old self.

Ian finished last school year as a regular full-time student. He was back in his accelerated math and gifted language arts classes and could finish a math quiz in the allotted time. He sleeps like a baby. We can go out to restaurants and movies, to the mall. He has friends over to play again. He’s not all the way back to how he was before this major onslaught began but he is nearly 80% there.

We are very mindful about the side effects of long term antibiotics on the development of microbial yeasts in the body and we counter this with probiotics. We give him about 150 billion units daily of combination live cultures: acidophilus, bifidobacterium, saccharomyces boulardii, lactobacillus, etc.We also go strong (2,000 mg. daily) on omega’s 3 and 9 (no 6) via fish oil, as well as anti-inflammatory and antioxidant nutrients: curcumin, quercetin, and N-acetyl-cysteine. He takes a low dose of melatonin for sleep.

The summer has been a bit of a roller-coaster ride, while Ian contended with a less scheduled day, more decision-making, and an increasing push by his therapist and his dad and I to continue to confront the remaining OCD behaviors pro-actively. Additionally, for the first time in almost seven years, we’ve been decreasing the SSRI’s, hoping to eradicate their use altogether.

The whole family attended the International Obsessive Compulsion Disorder Foundation (IOCDF) conference in July, attending both the PANDAS and “regular OCD” presentations, and came away feeling renewed with respect to support, knowledge, and opportunities for recovery. Ian is looking forward to the start of school and his 8th grade year, his final year in middle school.

And his parents? Well, we’re optimistic and buoyed by Ian’s continued progress, even in the face of changing circumstances (summer versus school year), the standard struggles of puberty, and the unique challenges of an autoimmune-driven behavioral condition. We take comfort in the knowledge that antibiotics will support him in the “petri dish” that is a public school.

Hope and help from ACN Latitude’s PANDAS forum

Shortly after I found Saving Sammy, I found the online ACN forums, and we have benefited greatly from the exchanges and experiences posted there. More than anything, though, we found hope and fortitude from the members. When we saw improvements so quickly, because we didn’t know any better, we expected those improvements to continue on the same trajectory . . . exponential improvement at a dramatic rate! When they didn’t, it was easy to become discouraged and impatient. It’s been the other families on the forum that have helped us hold on, ride the waves, celebrate the successes, ride out the short backslides, keep the faith, and dig in for the long haul. It’s the ACN forum that has provided dozens of links to scientific articles on the topic of PANDAS, suggested practitioners who could help us, given us ideas of time lines and expectations, etc. All of this information I’ve then been able to share with our medical team who, prior, were nearly as ignorant regarding this disorder as I was!

We believe that we will be a genuine success story, and I know that in part I have the ACN forum to thank for that. I am now also devoted to getting the word out, to telling everyone I know about this disorder, about the fact that childhood OCD doesn’t have to be a life sentence, that a strep test and antibiotics are far less invasive, and can be far more effective, than psychiatric medications.