On today's episode of the podcast, Katie interviews Rylee Neal who decided to become a Child Life Specialist from her past experiences being hospitalized with a heart condition called tetralogy of fallot. An experience with a Child Life Specialist during one of her...
Episode 106 | Elizabeth’s Story: A Son with PANDAS
Podcast Show Notes
Today’s guest, Elizabeth, had never heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) when her son was diagnosed with it. PANDAS is a tough diagnosis, because some doctors believe in it while others do not. Having a child with this diagnosis that only some doctors believe in is incredibly hard to navigate, to say the least. PANDAS is an autoimmune disease closely related to infections, so you will hear Elizabeth talk a bit about how her son’s ear infections seemed to lead to PANDAS.
Elizabeth also shares her thoughts about how society does not judge kids with colds, cancer, or appendicitis, but society tends to look down on you when your child suffers from neuropsychiatric symptoms. There are misconceptions that these symptoms are related to bad parenting, violence in the home, poor role models, lack of discipline, or just being a “bad child”. Parents of children with PANDAS have a lot to carry on their shoulders, and I am so glad Elizabeth is here to share her story.
In this episode, we talk about…
[2:46] Elizabeth’s family and background
Elizabeth and her family live in Tennessee, and they moved from Kentucky to open a second location of a spa they had started. They had two children when they moved, and they also adopted two more children within the next few years following their move. The spa took off, and they brought her brother-in-law on as a hair stylist. It was a real family affair, and life was good.
Elizabeth was a biology and chemistry major in college, and she went on to get a masters in sports medicine. She intended to go to medical school, but ended up doing physical therapy in a gym and she really fell in love with the business part of growing an organization. So while she went into business, she was still very science-minded. As the spa grew, they got into body contouring and she realized there wasn’t a great cellulite reduction device on the market. She developed one herself, and she was in the middle of launching that and her skincare line when her son became very sick with a bizarre illness that she had never heard of before.
[5:17] Elizabeth’s son’s first symptoms of PANDAS
In 2010, Elizabeth’s son was rolling around on the kitchen floor grabbing his stomach and complaining of stomach pain. He was barely 11 at the time, and Elizabeth thought his behavior was really unusual. She took him to the pediatrician, and he was diagnosed with strep throat. Elizabeth thought that was odd, since he was complaining of pain in his stomach and not his throat. They put him on amoxicillin, sent him home, and he started to get better.
When her son was younger, he did have a lot of ear infections and a couple bouts of pneumonia, but he seemed to have grown out of that. He had not had any significant medical needs in years. So following this strep diagnosis, they thought he would heal and everything would get back to normal. About two weeks after that visit to the pediatrician, Elizabeth remembers sitting at the table working and noticing that her son was unbuttoning and buttoning his flannel shirt over and over. She asked him what he was doing, and he told her that he couldn’t get it to button right.
Then, her son started to walk back and forth across the transition strip with his left foot going over it in just the right way. If it wasn’t right, he would have to start over. Elizabeth didn’t know anything about OCD at the time, but she was concerned about her son’s behavior. She called the pediatrician, who told her that it all sounded fairly normal and was nothing to be concerned about. The next day, her son started making a huge tent. He dragged every chair and piece of furniture that would hold any kind of sheet or blanket to make this monstrous tent, and he worked on it for 4-5 hours. He seemed obsessed with this tent, and Elizabeth called the doctor again. Again, the doctor was unconcerned.
On the third day, Elizabeth watched as her son crouched behind the chair in the corner and was terrified of the bugs he thought were crawling on him. His pupils were huge, and he thought people were staring at him through the window. It was Christmas time, and he crawled behind the tree and hid. Elizabeth finally called a colleague because the doctor was not concerned. He came over to the house, and he told Elizabeth there was something seriously wrong with her son.
[9:01] Getting the diagnosis of an acute onset of PANDAS
Elizabeth called the doctor’s office again, and this time she reached a different doctor on call. He told her that her son’s symptoms matched an acute onset of PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection. She Googled it, but she didn’t find a lot of available information at that time. The doctor advised Elizabeth to take her son to the Vanderbilt emergency room, and in some ways she felt relieved. She thought somebody knows what is going on, the doctor is telling her where to go, and someone will know what to do. Unfortunately, that was the furthest thing from the truth.
They went from a small town where they had one pediatrician their whole lives to the hospital with a barrage of doctors coming in and out. When Elizabeth brought her son in, she told them that she thought her son had PANDAS, without knowing how controversial it was at the time. She answered so many questions for different doctors, and some would misconstrue what she had said. The psychiatrist asked if he had always had OCD, and Elizabeth said her son had always been a perfectionist. Then the psychiatrist said that he has always had OCD and was experiencing an exacerbation, but Elizabeth knew that wasn’t it. It was a very stressful experience.
Neurology then came in and told Elizabeth that her son was still positive for strep. He also had pneumonia, and they admitted him. He had to undergo a spinal tap and they gave him IV antibiotics. Elizabeth was worried that the strep was attacking his brain, just as it attacks heart tissue with rheumatic fever. When his strep titers came back, he seemed to be getting better with the antibiotics. The spinal tap came back normal, and all other tests came back normal.
[12:33] Being discharged from the hospital
On the third day in the hospital, they told Elizabeth that they were going to discharge her son. She was surprised, and asked to see his chart. The chart said, “Psychosis – Resolved,” and Elizabeth did not understand how it had been resolved. Doctors were not providing satisfactory answers, and they released them with the directions to take her son to cognitive behavioral therapy and fill a prescription for Zoloft.
Elizabeth was confused, because they were sending him to talk therapy and putting him on an anti-psychotic for a strep infection. She wondered why nothing was being done to prevent future strep – antibiotics were not part of the equation. So, Elizabeth took all the instructions back to their family pediatrician.
As Elizabeth points out, it is so important to ask doctors their perspective on these kinds of illnesses. She never asked her pediatrician what his position was on PANDAS – did he believe in it? Did he understand it? She trusted he would have told her if he wasn’t sold on the fact that it was real, and that he would help her find somebody else to help her if he didn’t feel like he could help her. The pediatrician did tell her that she could bring her son in for a strep test at any time, but she would come to learn that they could only trust blood tests moving forward. Strep would typically no longer appear in his throat, and a sore throat would not be a telltale symptom.
They started talk therapy, and the anti-psychotic medication made her son a zombie. He was already on medication for ADHD in addition to that medication.
After that acute onset of PANDAS, Elizabeth’s son never really went back to baseline. He was fidgety, anxious, and displaying symptoms of OCD. They worked with a therapist on taming the OCD monster.
[16:28] More strep, different symptoms
After about a year of this treatment plan, it happened again. Her son was hearing songs, his pupils were huge, and his stomach was hurting again. Elizabeth quickly realized that this could be strep again, as his psychiatric symptoms quickly worsened. He became aggressive, and she called his therapist to make a house call because she did not want to bring him to the office. The therapist told Elizabeth that he needed more medical rule-outs before she would continue therapy.
Elizabeth told the pediatrician that they needed more testing, but nothing was ordered and no antibiotics were provided. She called around to other pediatricians in the area, but nobody seemed to know what to do. Her son’s symptoms were escalating, as he received no medical treatment for three years.
In the meantime, Elizabeth was experiencing symptoms of numbness in her hands and hair loss. People were convinced that it was the stress. She wasn’t able to work as much, and she wasn’t traveling because she had to take care of her son. So, she told herself that she was just stressed, but her own symptoms were escalating as well.
When her son was in 8th grade, the pediatrician told Elizabeth that she needed to be a better parent. She quit consulting, she quit traveling, she put a GM in charge of the spa, and she stayed home with her children for a whole year. She implemented ‘total transformation’, which is a rigid rewards game with documentation. Her son’s symptoms would flare, and he would end up with six bus referrals in three days.
During that school year they had a housekeeper who would work with her son on Spanish. One day she called and told Elizabeth that she had been diagnosed with strep throat. Elizabeth was praying that her son didn’t get it, but he seemed to be a strep magnet. Within 24 hours, she received a call from the school nurse that her son was throwing up. She picked him up, and his behavior was next level oppositional and defiant.
As those behaviors escalated, the school was threatening to call juvenile because he was unruly. Elizabeth researched a test that had come out for PANDAS, and she asked the pediatrician to order the test. The pediatrician wrote her a letter saying that not only was he not going to order the test, but he was firing her from the practice because she had not followed his medical advice.
Elizabeth had not gone to the therapist they had put in the notes from Vanderbilt, because that therapist had a six month waitlist. Instead, she found a private therapist so her son could get help sooner. Since the medical records weren’t all connected, they thought she hadn’t taken him to a therapist at all.
[23:38] Juvenile court and the path to treatment
Elizabeth felt like she never got a break, and she never had time to herself. She and her husband divorced, and looking back now she can see that he was experiencing symptoms as well. She thought he was being lazy and not helping, while she was carrying the load and beating herself up.
By the time a psychiatrist agreed to order the test for PANDAS, they were involved with juvenile court. This all happened within three weeks of that cycle of strep infection that she just mentioned, and Elizabeth was told that the juvenile courts could be a source of help. Her brain went to the idea that a judge could order a test or order a doctor to order the test.
Instead, they were tangled up in the court system and given a laundry list of rules. Therapy was ordered for Elizabeth, and her son was in and out of juvenile detention. There was no medical treatment available, and she did not want him to go into a behavioral facility. He was able to get an official PANDAS diagnosis, and a doctor finally crossed out ‘behavioral issues’ on his chart and got her son on proper medication.
At that point, he had not had any medical treatment for years and they didn’t know which viruses could be at play. He had no physical symptoms, but he displayed a lot of psychiatric symptoms. When a virus flared, for him it looked like rage, insomnia, frustration, or labile emotions. Most people would get a fever or a sore throat with a cold or a flu, but her son would show OCD or subsets of OCD. She would take him to a therapist, and he ended up with almost 30 different diagnoses.
When the compulsions kicked in, he had a compulsion to drive cars. They made an appointment with a pediatric neurologist in Washington DC, but he had a six month waiting list as well. When it was time for that appointment, her son eloped from the hotel room a few times on the way. He had his ankle monitor on, but he somehow managed to undo it. They had to pay thousands of dollars for treatment because insurance wouldn’t cover it, and as they left the office the doctor confirmed that her son had PANDAS. Elizabeth was told that his behavior would get worse before it got better, and Elizabeth was terrified because the judge was already watching them carefully. He was on probation from juvenile court, and the judge was unconvinced that Elizabeth was doing enough to control her son.
They drove home all night, and when they arrived her son would not go to sleep. He was up all night pacing, and she had to give him steroids. After Elizabeth had been up for 36 hours, she had a friend come help her so she could take a nap. Her friend must have fallen asleep, because her son got the car keys and totaled Elizabeth’s car. He had to go back to the detention center, where he was kept in solitary confinement.
Elizabeth complained that they were going to give him PTSD, keeping him alone in the cell for weeks. The court made moves toward taking Elizabeth’s custody, so she had to get a lawyer and learn more about the court system just to keep custody of her son.
[33:58] Searching for the source of PANDAS with medical testing
While this was all going on, Elizabeth was getting sicker. Her adopted children, who had always been well-behaved, were acting out. Again, Elizabeth thought they were all under a lot of stress and that was it. One day, her adopted daughter came downstairs while Elizabeth was doing some research, and she leaned in and showed Elizabeth a boil on her ear.
That’s when it hit Elizabeth that something was actively contagious in their home. She was able to get her son into a doctor for lab work, and combined with the boil on her daughter’s ear she felt sure that something medical was going on. Her son’s only physical symptom was redness around his eyes above his sinuses, but his lab work showed an active mycoplasma pneumonia infection and extremely high streptococcal pneumonia titers. Elizabeth ordered his full medical record, because she felt like she needed to put the puzzle together herself.
Elizabeth brought her son in to several specialists for testing, and his psychiatric symptoms were improving with consistent antibiotic treatments more than they had with the anti-psychotic medications. As she went through his records with the doctors, they started to realize that the pneumonia he had as a baby may have never truly left his body. When he was around six or seven, he stopped getting high fevers and physical symptoms, and by third grade he was diagnosed with ADHD. He may have been infected with a resistant strain of pneumonia and his immune response became redirected over time.
When his genetic testing came back, there were no results indicating autoimmune issues. At that point, Elizabeth knew it had to be environmental. She called around looking for more research on mycoplasma pneumonia, and she was wondering if it was contagious in her family and causing her symptoms as well. By that time Elizabeth had been diagnosed with complex regional pain syndrome and she was on pain medications.
The research group Elizabeth connected with was discussing pathogenic mycoplasma pneumonia, which has been genetically modified to be antibiotic resistant. It is more virulent , and pieces of viruses were woven into the genome of this bacteria so they would express at different times.
Apparently, there was a lot of testing going on in the Texas prison systems in the late 1980s, and they were testing it on death row inmates. Somehow, this virulent strain got out to the local community, and the citizens were getting ALS, MS, and rheumatoid arthritis at a 5000% higher rate than the rest of the country.
The more Elizabeth read, the more she knew this unbelievable story was true. Her brother-in-law had been down there in Texas back in 2003, right before he moved in with them when they brought him on as a hair stylist in their salon. She remembered that when he moved in, everybody in the house got very sick. They thought it was the flu, but they also ended up with big boils. They now know it was MERSA, but nobody knew that at the time.
It also made sense because once he moved away from them, any family member he moved in with experienced suicide, addiction, cancer, or autoimmune diseases. She also read that if a family has this illness, pets will pick it up as well. Their pets had died early deaths over the previous 10-15 years, and even the dog they had recently adopted had gotten sick. Doctors would not test Elizabeth or her family members because they didn’t have symptoms of pneumonia, so she took the dog to the vet and asked them to check for the specific organism. It came back positive, and Elizabeth finally knew what had been impacting her family for so many years. They ended up needing long-term antibiotic therapy, but they did completely recover.
[43:58] How Elizabeth’s son and family are doing after medical treatment
Elizabeth’s son is doing well now, and he is going to college to study biology. He does jiu-jitsu, teaches guitar lessons, and works in his family’s construction business.
[45:09] Elizabeth’s book: What’s Wrong With My Child?
If you are interested in reading Elizabeth’s book, you can go to whatswrongwithmychild.com or you can order the book from Barnes and Noble. They also have a website for their wellness program, and Elizabeth works to support families going through these difficult medical situations.
Connect with Elizabeth:
Book: What’s Wrong With My Child?
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