Every parent hopes to raise happy children. However, some parents see their child’s behavior change overnight in a dramatic and truly distressing manner. Today, doctors know that this might have nothing to do with anything that’s going on in the family unit or with external problems, but rather with a health issue.
One of these still largely unknown issues is called PANDAS. This cuddly-sounding acronym belies its worrisome meaning, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
This fortunately rare disease tends to strike young children. It does so following a strep infection that triggers a misdirected immune response which results in inflammation of the child’s brain.
Strep bacteria survive in the human body by hiding from the immune system as long as they can. By placing molecules on their cell wall, they disguise themselves. They look like molecules found on brain, heart, joints or skin tissues, and avoid detection.
Eventually the immune system recognizes the molecules on the strep bacteria as foreign to the body. However, because of the mimicry that took place, the immune system doesn’t only react to the strep molecules, but also to the molecules that were mimicked. Antibodies “attack” the mimicked molecules in the patient’s own tissues.
PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, is a similar issue, although not caused specifically by a strep infection, but other types of infections and other possible triggers.
There is no conclusive way to test for PANDAS or PANS. Both are diagnosed based on symptoms and laboratory findings that cannot be explained by other neurological or medical disorders. If, for instance, a child abruptly develops tics, extreme anxiety, hyperactivity, or OCD, doctors must explore further. PANDAS or PANS could be the cause.
“You notice something is going on because of the child’s behavior. In my daughter’s case, she had very aggressive outbursts. I was told that this is her way of showing us she is sick. There’s no fever and there are no flu-like symptoms. Instead, there are moments of fury. My child gets very, very aggressive all of a sudden. When she gets exasperated, she also gets very hot,” says a California mother. “She also suffers from ODD, Oppositional Defiant Disorder. My daughter didn’t use to be like that. She changed all of a sudden.”
Upon initially noticing this, the mother took the child to be seen. She described the symptoms and testing concluded that an infection was present, and that there were high levels of white blood cells.
“At this time my daughter is on strong antibiotics and 18 different supplements. She also needs to follow an alkaline diet,” the mom explains. “The doctor believes this issue will stop in five years or so, before my child becomes a teenager.”
Despite this promising prediction, the mother feels PANDAS and PANS can be very tough, not only on patients, but also on their families.
“These last two years have been a nightmare. You see your beautiful childsuddenly become aggressive, angry and very disrespectful. You know that’s not your daughter. The doctor has been very helpful, letting me know that I need to be very patient,” says the mother.
She was advised to keep the child busy, since boredom was leading to exasperation. Now, the family encourages the girl to sing along with her karaokemachine, play guitar, or paint.
The mom found solace in speaking with another parent who had gone through a similar situation. She feels that interacting with others who understand is very beneficial, and suggests forming and attending support groups for families of PANDAS or PANS patients.
“Many parents are confused. They think their kids are spoiled. They wonder, Whatam I doing wrong? This kept me up for nights on end. But it’s not us. We need to be patient, meditate, and get some sleep. We need to understand that it’s not us,” says the mom, who also suggests setting up an appointment with Mae Kinaly, MD, at Integrative Medicine Orange County (949-860-7088).
When seeking medical treatment, it’s important to go to experts who are familiar with PANDAS and PANS. Otherwise, the child could be misdiagnosed with a psychiatric illness and treated exclusively with psychotropic drugs, which would not address the true root cause of the problems.
In addition to PANDAS and PANS, other health issues have frequently been misinterpreted. That is the case of AE, or Autoimmune Encephalitis, inflammation of the brain which occurs when the body’s immune system mistakenly attacks healthy brain cells.
Pennsylvania-based Josep Dalmau, MD, PhD, offers a fascinating Spanish-language talk on this topic, which can be found at https://youtu.be/-QnNKYsbN4I .
He has identified various autoimmune brain diseases, each one with its own characteristics. Possible symptoms can include a decrease in memory, thinking skills, or muscle movement andcoordination, as well as personality changes, seizures, hallucinations, and more.
A while back, Dalmau saw a girl suffering from inflammation of the brain, but the cause was unknown.
“After months of study, we realized that this patient exhibited traits that three other female patients showed. All four cases were identical, affecting very young women. They had all experienced acute psychosis, then a decreased level of consciousness. They also had a small, benign tumor,” explains Dalmau in his lecture.
Research was carried out and now it is known that only 25 to 30 percent of patients are male. This is mostly a young woman’s disease and around half of them have a tumor known as an ovarian teratoma.
This tumor encompasses a range of tissues, including nerve tissue, which is quite similar to brain tissue. The similarity could be what triggers the immune system’s response, which is misdirected toward the brain. When there is no tumor present, the cause of AE is not always known.
Ana Lavalle, mother of a teenage girl living in Mexico, is interested in raising awareness as to AE. She urges parents to read “Brain on Fire”, by Susannah Cahalan, and to watch a movie by the same title based on the book, in order to gain a better understanding of the problem.
Ana’s 19-year-old daughter suffers from AE despite not having had the tumor mentioned by Dalmau. Her first symptom was a vision issue.
“She said she saw a light that was too bright, as if the sun were in her eyes. But this was only happening out of one eye, and it was only to one side of that eye. She was able to see normally otherwise. I took her to get her vision tested. Everything seemed fine, so we went to a neuro-ophthalmologist. Everything was fine, but she still couldn’t see properly, so we went to a neurologist,” Ana recalls. “Shortly afterward, her eyesight declined sharply. Her sight was at five and six diopters, although she was 18 years old at the time, had always been a straight-A student and had never worn glasses.”
Shortly after, the girl started fogettingthings, such as where she had left her purse.
“Then, she started asking odd questions, such as, Mom, how do you hold a fork?, or, What is shampoo for? Since she was forgetting very simple things, we went back to the neurologist, but nothing was found, even after carrying out a number of tests,” Ana says.
Her daughter was, however, hospitalized for a week, because of impaired movement. Initially she was diagnosed with stress and anxiety.
“She did have two episodes of passing out or fainting while in the hospital. A spinal tap, scans, electroencephalograms, blood work—all of this had been done but nothing out of the ordinary came up, though they did say the fainting spells had been syncopes, in which the brain shuts down to protect itself from dangers,” Ana explains.
The mom sought out therapy to reduce her daughter’s stress levels, but the teenager was having a harder time speaking, understanding, and moving as time went by.
“She was becoming paralyzed and suffered from two very concerning epileptic episodes. She was hospitalized again, the same tests were performed, and all results came back normal. She was getting worse while in the hospital; she couldn’t speak or move properly,” the mom says. “Finally, they tested specifically for an autoimmune disease and that test came back positive.”
Treatment started at once. The teenager was prescibed anticonvulsants, calcium supplements, cortisone to reduce inflammation of the brain and an array of other medications, including one that keeps antibodies in check.
Ana’s child also underwent a blood “cleaning” process called plasmapheresis. On a monthly basis, she started getting intravenous gamma-globulin therapy at the hospital.
Ana and her family have been amazed at the patient’s drastic improvement in a far shorter time than was expected. The teen was released from the hospital just two months ago and is doing wonderfully.
“She’s almost back to normal. She recovered her ability to move, speak, and understand. Now she’s working on her memory. There are things she needs to relearn, or rather to remember, since she already knew them”, says Ana. “The doctor told me her improvement has been extraordinary”.
And the mom has yet another reason to feel happy and optimistic. Unlike other autoimmune diseases, the type of AE that her child suffered from can be fully curable.
Ana would like other parents of children living with AE to educate themselves on the topic, because information will empower them and make them feel more at peace.