This is a story about a local family and their struggle with PANDAS. It will run in Sundays Kitsap Sun Newspaper. Worth a read. Share it if someone you know is affected. It is very informative.
CONNECTING STREP TO PSYCHIATRIC SYMPTOMS
By Terri Gleich, Special to the Kitsap Sun
Tristan Gammill, 7, was terrified of just about everything and no one could figure out why.
Normally a carefree, happy child, suddenly the Port Orchard second-grader thought she was dying. She wouldn't jump into the pool at Great Wolf Lodge because she thought she was allergic to the water. Her pillow was wet with saliva because she was scared to swallow. She feared her throat was closing up. She refused to eat.
Tristan complained of a scratchy throat, but when tests failed to find a physical problem, she was diagnosed with Obsessive Compulsive Disorder and treated with counseling and an antidepressant.
It wasn't until three years later, after her OCD symptoms flared up in January and she was unable to eat, sleep or go to school, that a psychologist suggested it might be PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
That led to strep testing, antibiotics and a dramatic recovery. Now Tristan's parents, Scott and Crystal Gammill, are working to spread the word about the devastating but treatable effects of PANDAS.
"I saw somebody who was totally normal and two weeks later, she was crazy," Crystal Gammill said. "Seriously, you do have a different child and it's hard for someone to believe."
That overnight transformation is the hallmark of PANDAS, according to Niran Al-Agba, a Silverdale pediatrician who has treated more than two dozen cases, including Tristan's, and attracts PANDAS patients from throughout the Pacific Northwest.
"My heart goes out to the families that are going through this because I think a lot of them are looking for answers and we don't have a lot to give them," she said.
There is no definitive test for PANDAS, and some doctors are reluctant to diagnose the condition. Others have never heard of it. The PANDAS Network, a national group working to educate medical professionals and support parents, estimates the disorder affects one in 200 kids and usually starts between ages 4 and 9.
It also contends that up to 25 percent of children diagnosed with OCD could have PANDAS or the related condition PANS (Pediatric Acute Neuropsychiatric Syndrome), in which psychiatric symptoms are caused by other bacteria, viruses or environmental factors.
Al-Agba learned firsthand about PANDAS a decade ago while treating a 6-year-old patient whose personality radically changed when he had a sore throat. "He was sobbing, completely melting down. It was more than your average kid not feeling well." She found he had strep, prescribed antibiotics and two days later he was back to normal. The symptoms have returned a couple of times since, but only when he had strep, not other illnesses.
PANDAS was first documented in 1998 by Susan Swedo, a pediatric and developmental neuroscience expert at the National Institute of Mental Health. She talks about the condition in a documentary being developed by the University of Florida Research Foundation and Tim Sorel.
"Kids are not supposed to be perfectly healthy one day and then completely tormented and very psychiatrically ill the next," Swedo said in an excerpt on the website mykidisnotcrazy.com.
"Kids with PANDAS, they can't leave their bedrooms sometimes, they don't leave their house, they've given up playing with their friends, they are psychiatric cripples."
According to the PANDAS Network, the condition is caused when the body's immune system misfires and attacks the brain, primarily the basal ganglia. That area affects movement, cognitive perception, habit, logical thinking, emotions and the endocrine system.
Al-Agba said it's established science that an untreated strep infection can permanently damage the heart, kidneys and joints. That's because strep is capable of "molecular mimicry," meaning it disguises itself as other cells in the body. When the immune system galvanizes antibodies to fight the disguised bacteria, they also ravage the part of the body the strep is mimicking. The bug is easily treated with penicillin or amoxicillin.
"The thought process is, can it also attack brain cells? Are there certain people who have a weakness? We can't take a biopsy of the brain to determine for sure," Al-Agba said.
It's possible that children who experience tics or OCD symptoms might already be prone to those conditions, and the immune system's reaction to the strep bacteria acts as a trigger, she said.
Sometimes the symptoms disappear after treatment with antibiotics or steroids, but not always. The longer the condition goes without treatment, the harder it is to control the psychiatric symptoms, which are not always responsive to antidepressants.
Other possible treatments for PANDAS include IVIG, an intravenous blood product that contains antibodies from a large group of people and is thought to block the immune system's attack on the body. Al-Agba does not prescribe that treatment for her PANDAS patients because she doesn't think the benefits outweigh the risks.
One of the reasons PANDAS is challenging to diagnose is because testing for strep is not definitive. When Tristan Gammill was checked, her throat culture was negative and blood tests showed mixed results.
In addition to an association with strep, the National Institute of Mental Health lists the following criteria for a PANDAS diagnosis:
Clinically significant obsessions, compulsions or tics
Abrupt onset of symptoms or a pattern of improvement with abrupt relapse
Begins before puberty
Associated with other neuropsychiatric symptoms, such as ADHD, severe separation anxiety, bed-wetting, developmental regression
"If you really think your child has PANDAS, have your child evaluated by a pediatrician or pediatric specialist," Al-Agba advised.
For the Gammills, life is starting to get back to normal, although Tristan still has some anxiety and had a setback after a recent ear infection.
"There are still some symptoms. She'll be sitting in class and all of the sudden be very afraid," said Crystal Gammill.
"Now we know we need to keep on top of it," said Scott Gammill. "It all happened so quick, but it's so slow to get back."
Asked what she'd like people to know about the condition, Tristan said: "That you can get PANDAS, but you won't die from it."