Benjamin’s PANS PANDAS Story – (not autism)

Benjamin’s Story

It was clear at my son’s two-year appointment that my son was not meeting his milestones. He was non-verbal, did not parallel-play, did repetitive play and movements, was in his “own world” and had temper tantrums that were more than what the terrible two’s should be. I was referred to the “Birth to Three” services in CT. My son was given speech and occupational therapy. I also supplemented these services with outside speech therapy through Norwalk Hospital. He made a repetitive motion with his eyes where he followed the line of any long flat item like a fence or long dresser. Back and forth, he went. We went to a vision therapist who said it was a calming mechanism for him, but his eyes were okay. Autism kept being brought up – does he have it, doesn’t he have it, he checks off most of the boxes but let’s wait.

Six months later, I welcomed a baby girl into our world. My son ignored her. It was clear he was not getting better. He would scream if I walked him on the “wrong” side of the road, refused to go into certain stores, or used the “wrong” cup. But since he was non-verbal, it was challenging to figure out what he wanted. Looking back, he definitely had OCD. He was not affectionate. He was also super hyper. I built a fence around my backyard because it was hard to keep up with him, especially with a newborn in tow. I call it his college fence because of its cost.

He had done a twos program in a regular preschool. The teachers there were a godsend and really tried to get him to assimilate with other children. But by his third birthday, it was clear he could not continue there. He entered the Special Education Pre-School program in Wilton, CT when he was 3 years old. He was saying a few words and was getting speech therapy. I continued to supplement with outside Speech Therapy. Despite continually trying to potty train my son, he was unaware of what we were even trying to do.

I had a great relationship with the school. They were trying to figure out his issues and help with a diagnosis. He had many autistic symptoms, but the headteacher kept telling me they did not think he was autistic. He was finally diagnosed with Apraxia, which is a speech issue. They said his tantrums and repetitive behaviors and inability to play with others were since he was frustrated that he could not talk. It was also determined that he had low muscle tone, which contributed to his speech problems. He drooled constantly. The poor kid wore a bib even if he was not eating. No wonder breastfeeding was a disaster for both of us.

It was such a difficult time for my son and our whole family. We had only a few playdates because his behavior was so unpredictable. The temper tantrums were getting worse and worse. He seemed to get more energetic at night, and getting him to bed was difficult. He was my first child and a boy. Was this normal? I was becoming more and more isolated every day.

My son did preschool summer school. At that time, it was a debate about how much sign language to teach him. The staff felt that if he learned too much sign language, he would not try to speak. Yet, using sign language could decrease his frustrations and therefore reduce his temper tantrums. I remember a day when Benjamin was 4. I went to pick him up at school, and he FINALLY learned how to say his name. I cried right there and then in the parking lot.

My son also suffered from severe asthma. When he was four years old, he got a bad cold, and his asthma was so bad that I took him to his pediatrician. His oxygen levels were so low that she sent us straight to Norwalk Hospital. He was admitted and stayed from Friday night to Sunday. It was Halloween weekend, so he must have been 4 ¾ as he has a January birthdate. I was so scared as I watched the monitors. I stayed with him the entire weekend and slept with him in his bed.

He recovered from that, and we went into the whirlwind of Thanksgiving and Christmas. But Benjamin started to get better in every way. His autistic behaviors seemed to melt away. His speech improved rapidly. I was able to potty train him. His temper tantrums reduced. He was engaged and affectionate. And his OCD relaxed. When I asked the special education teacher what was happening, she said that his system was maturing, and all the therapy he has had since age two was coming together in a positive way. I now know that the steroids and antibiotics my son was given in the hospital for his asthma were REALLY the cure! He was improving so much and so rapidly that in his final evaluation in the spring of the 4’s special education preschool program, he was recommended to be mainstreamed for kindergarten without an aide!

I made sure that his kindergarten teacher had received a complete transfer of his file from Special Education Services so she could understand my son’s background. When I met with her after the first week of school, she could not believe that the child in her class was the same child described in the file she was given.

I finally met my son. It was like he came out of the fog.

All was well until the Spring of 2011. Benjamin was in 4th grade. I was diagnosed with Stage 3 breast cancer in the fall of 2010. After a year of treatments, in 2011, Benjamin started with severe anxiety about his own health. He thought he had every disease, was worried that the food he ate was spoiled, etc. I took him to the pediatrician, who recommended a child psychologist. We went to therapy for more than one year (June 2011-Sept. 2012). It helped a little bit, but my son was still a prisoner of his anxiety. He was attached to my hip! He needed constant reassurance that he was okay. It was so stressful. The pediatrician and therapist thought his stress about my cancer was manifesting itself in worries about himself. They thought that watching me be so sick triggered his anxiety.

In September of 2012, my son’s grandmother died, and my sister had surgery to remove a benign brain tumor. She recovered from the surgery at our home as she is single with no children. One night, she started hemorrhaging and was rushed to the hospital. Luckily, it happened at night and I was smart enough to tell the paramedics not to use sirens. With his aunt nearly losing her life and his grandmother’s death, Benjamin’s anxiety reached a new high. He also was starting having vocal and physical tics. I had a friend whose daughter had physical tics. I called her up and asked her what her daughter’s diagnosis was, and she said PANDAS. So off I went to my computer and googled PANDAS. WOW!!!!!!!!!!!!! The symptoms described my son. My friend got me an appointment with Dr. Bouboulis in Darien, CT. He prescribed Augmentin for my son, and once again, his symptoms melted away.

He was on Augmentin and was doing very well, so in the summer of 2013, the doctor suggested we try to wean my son off of Augmentin. It was a disaster. He got two strep infections in a row, and his PANDAS symptoms return. He went back on Augmentin, but he did not return to normal behavior. He was put on a second antibiotic that was not helping either. Then he caught a stomach bug in January 2014, and he was the worst he had ever been. He constantly had to pee, had extreme anxiety, thought he was losing his mind and was totally aware of it. He was begging us to take him to the emergency room because he thought he had numerous diseases. His immunologist prescribed a steroid burst that reset my son’s system.

My son was not a candidate for IVIG. But it was clear that my son needed more help than his immunologist could provide. He had flares on and off, and I call it “teetering.” It is a scary place for anyone to live. Good days and bad days, and you never know which one you will have. We started to see a top Integrative doctor (MAPS), and she tested my son for the MTHFR gene issue that he was positive for. She put him on anti-inflammatory and anti-fungal supplements to fight his yeast and inflammation issues. He has improved dramatically, but starting this summer started to ‘teetering” again. He is in the midst of puberty, and he had a bike accident this summer that scraped him up badly. That caused yet another flare.

My son has been in and out of CBT therapy for the last few years to give him tools to deal with his flares and ongoing anxiety. While he does not have a 504 plan or IEP anymore, I have gotten him excused from health class these past two years. Any health-related news report or article he sees sends him into a tizzy.

I am ready to try Neurofeedback at this point to see if that can improve his anxiety and reduce the effects of any future flares. It seems that with every flare, it gets harder and harder to get my son to within a “normal” range of anxiety.

In looking at my son’s medical files, strep seems to be what caused his PANDAS. Strep is often treated with the typical 10-day course of antibiotics but obviously, ten days was not enough for my son.

My son has had PANDAS since age 2. That is why I think it has been so hard for him to shake some of the PANDAS symptoms. His anxiety, OCD, and tics often come back with each flare.

It is clear that not enough parents and professionals are educated about PANDAS. My pediatrician apologized to me for not diagnosing my son properly. She said that the children in her practice that have PANDAS could not function at all and were curled up in a ball and could not go to school. She said she learned a lot that the symptoms can vary in severity, and not all PANDAS kids have the same symptoms. As I said, my friend’s daughter ONLY had physical tics. For years, my son had a variety of PANDAS symptoms but not tics.

So let’s review how many professionals have seen my son and missed the diagnosis:

  • 2 pediatricians
  • school psychologist
  • special education teacher
  • Head of Special Education
  • Summer School Special Education teacher
  • 3 speech therapists (preschool, summer preschool, and Norwalk Hospital)
  • vision therapist
  • preschool teacher in 2’s program
  • Birth to Three evaluator
  • Birth to Three Speech Therapist
  • Occupational Therapist
  • Special Education Aides in Preschool
  • Counselor in school (when I was sick)
  • School Teacher (when I was ill)

I expect if he got his PANDAS diagnosis sooner, he would not be dealing with ongoing anxiety and flares as much as he is. And that is why I am working on getting the word out about PANDAS. I am sad that my son lost so much of his childhood due to this illness. I also know the emotional, physical, and the monetary toll it took on my family and me. Words cannot describe the heartache.

But with a team of integrative and traditional doctors, including an immunologist, PANDAS specialist, Naturopath, and neurofeedback expert, my son is doing well as was able to go away to college. He still has occasional flares, but now we know what they are and have the right professionals to help him when needed.