AUSTIN (KXAN) — It’s an infection so common just about every child gets it at one point in his or her life. A strep infection in kids can usually cause a sore throat, fever, headache and fatigue but some parents say it’s also causing sudden and dramatic physical and psychotic symptoms in kids.
“It’s just not my child. I put my child to bed one day and he just woke up the next day and he was a completely different kid,” says Tracy, mom to a 13-year-old in Austin who requested her son’s name and their last name not be used.
She says in the winter of 2017 her fun, gentle, loving son had a life-changing reaction when he was exposed to the Streptococcus bacteria. Tracy says her son suddenly developed a droopy eye and twitching. Most concerning, he also went into sudden psychotic rages and had hallucinations. She recalls one day looking over to see him holding his head tightly.
“He said, ‘Something is wrong with my brain. I keep thinking some person is in my brain they are mind controlling.’ He’s pounding, ‘Get out of my brain. My brain is on fire,’ and I remember thinking, ‘something is wrong with my child.'”
Tracy says when her son started to have seizures, they checked him into Dell Children’s Hospital. “His whole body would convulse and his dad would have to hold him down for three, four hours at a time because he would try to self-inflict harm to himself or his siblings or somebody else,” she says.
The family said they explained to doctors the sudden change in their son, but says they didn’t believe them. So, Tracy filmed his rages to prove it and shared the painful videos with KXAN.
Tracy says the hospital’s psychiatric team wanted to place her son on several psychiatric medications without him ever having a history of mental illness. Around that same time, a friend told her about PANDAS. It’s a rare disorder that stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
Tracy says her son had all the signs of the disorder: the sudden eye twitch, obsessive-compulsive disorder and psychotic behavior after exposure to strep. When she asked his physician about it, “he said ‘I don’t believe that. I think that’s a made-up diagnosis.’ To me, that was so completely disheartening.”
In search of an alternative treatment, Tracy started researching PANDAS and a doctor who would believe in it.
What causes PANDAS?
In most cases, when a child gets a strep infection, their body produces antibodies to fight it off and it usually improves, especially if doctors prescribe antibiotics. However, the theory behind PANDAS is, for some kids, the body attacks the brain instead of the infection. The PANDAS network, a website created by parents of children and supported by physicians and researchers who believe in the diagnosis, describe it as a misdirected immune response that results in inflammation on a child’s brain leading to life-altering symptoms, including:
- Personality changes
- Decline in math and handwriting abilities
- Sensory sensitivities
- Restrictive eating
While doctors do have a medical test to determine if a child has a strep infection by swabbing their throat, there is no test that can tell parents if their child has PANDAS. It is a clinical diagnosis and open to interpretation.
The Mayo Clinic recognizes strep may lead to inflammation and “researchers are investigating a possible link between strep infection and a rare condition, PANDAS.” However, some in the medical field are skeptical a strep infection can trigger such dramatic changes in children.
KXAN asked pediatric psychologist Dr. Julie Alonso-Katzowitz at Dell Children’s if she believes in the disorder.
“Clinically, yeah, I see cases that are very consistent with this really abrupt onset of symptoms,” she says.
But she cautions parents not to panic.
“On a routine basis, it’s very unlikely that if your child has strep they are going to develop PANDAS afterward,” Alonso-Katzowitz says. “It’s just a very small subset of kids for whatever reason may be more vulnerable to an immune reaction or to the bacteria.”
Rare, or misdiagnosed?
The PANDAS network suggests as many as 1 in 200 children is affected by PANDAS or it’s subset PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome and is triggered by any infectious agent, not only strep.
“I don’t know anybody intentionally ignores it, but I do think that there can be more information out there,” says Jana Roso. She’s Tracy’s son’s pediatric nurse practitioner and says the disorder can be misdiagnosed.
“Often times I think these children are seen, and depending if the parents have ever heard of PANDAS or if the clinician is familiar with it, then they might be diagnosed with OCD or a tic or movement disorder and then all of the other symptoms may not be recognized right away,” Roso says. “So, it can be misdiagnosed.”
Since opening her practice Neuronutrition Associates in Austin, Roso says she’s seen a number of families searching for help, including Tracy’s.
“We wanted to open up our own clinic and really dive into what is the root cause of why these children are developing PANDAS or why they are struggling in school,” Roso says. “We see a variety of things, but we do see a lot of children with PANDAS.”
No known cure, but management possible
When asked if the disorder can be reversed, Roso says “because it is autoimmune in nature, there is not a known cure. However, we can help these patients retain a recovery period and be stable.”
Some researchers say if PANDAS is not recognized by physicians and treated with antibiotics to clear the bacteria and the inflammation of the brain, then the symptoms will intensify. If it’s untreated, permanent cognitive damage may occur. Roso says some children may need to take antibiotics for longer than 10 days, which is the typical length of taking the medicine for strep throat.
As a parent, my heart breaks for them because it’s not only the child struggling, it is the entire family dynamic that is disrupted.”
There are other treatments, including cognitive behavioral therapy and steroids. Others, like intravenous immune globulin or IVIG, are more controversial. The blood product is made up of antibodies that can be given intravenously to fight infections.
When parents like Tracy ask Roso if their child will ever return back to what was considered their “normal” behavior after treatment, Roso says “that’s a hard question to answer for these parents. They are in a bad spot. As a parent, my heart breaks for them because it’s not only the child struggling, it is the entire family dynamic that is disrupted. My answer is, we are going to do everything to stabilize your child.”
A new normal
For Tracy’s son, stable means supplements, a strict diet and Equine Assistance Psychotherapy. Once a week, he and his parents make the long drive to a horse stable hidden among green trees and dirt roads, far away from their busy Austin life. Once there, he learns how to interact by controlling his behavior and energy level to engage with the horses.
“A horse can read that and they’ll respond to it and so they’ll naturally move away if our energy is too high. If our energy is too low, they’ll have a hard time engaging with that horse so we have to find that just right energy level,” says the boy’s counselor, Linsey Bussey.
She says this type of therapy will help him cope when he has recurring episodes of rage from the disorder.
“It’s something that [he] can feel more in control of his body,” Bussey said. “Sometimes what we see in PANDAS is that kiddos feel like they are out of control or feeling like they have no power, and all of sudden an attack comes out of nowhere or a rage comes out of nowhere so kiddos are learning to get more tools.”
Tracy says it’s helped her son and believes he will eventually make a full recovery. “He has such discipline and motivation to get well, and that is so uplifting and he’s been my idol he’s been such an inspiration to me to see him go through the process,” she says.
He is also back to his normal routine.
“I like to play football, sports, athletics, I like to be adventurous,” he says and adds, “My mom is always there for me. Always has been. She’s my biggest warrior. She’s always there for me.”
And, Tracy is not done fighting.
‘I know the kind of research that is needed with this disease’
Tracy is on a new mission: proving to the medical community at large that PANDAS is a real diagnosis.
Her concern is the disorder is being “missed” or mistaken for a psychiatric disorder and kids are being placed on harsh psych drugs as a result. She says insurance does not cover her son’s treatment and hopes if PANDAS is widely accepted as a diagnosis, it will help other families. It’s the reason why he is now part of an international study on the disorder.
The mom says she is using her Ph.D. in nutrition and her strong background in genomics working in research in the field of cancer and cancer genomics/diagnostic testing to research PANDAS.
“I have helped major cancer centers set up research trials in collaboration with biotech companies that I have been a part of,” she says. “I know the kind of research that is needed with this disease and with my background could gather the appropriate collaborators.”
Both critics and advocates of the disorder argue more research is needed to better understand the symptoms of PANDAS and treatment. That’s exactly what Tracy wants to encourage, and it starts with awareness among physicians and parents.
“If you say to your pediatrician, ‘Gosh, my kid’s wearing the same green shirt for 10 days and won’t take it off,’ the next question should be: ‘Is this new behavior?'” Tracy says. “If so, let’s swab his throat.”