Developmental and behavioral disorders are ever on the rise for American children, with an estimated more than 20% suffering from some type of mental disorder (source). However, a little know condition, called PANDAS syndrome, may really be at the root of some of these children’s disorders. Below, guest poster Jaclyn Harwell of The Family That Heals Together tells us more about PANDAS syndrome and her family’s experience with it.
Though we only recently got an official diagnosis of PANDAS, I’ve known for several years now that it was the true cause of my son’s behavioral disorders.
As a baby, he was sensitive to his environment; he had frequent allergies and rashes. He avoided touching certain things, like grass. By age one, he had emerging symptoms of ADHD.
Our pediatrician blew me off when I told him I thought something was wrong. I relayed stories of how he lined up items, obsessed over certain types of toys, and exhibited other strange behaviors. The doctor made it clear that the problem was me and my lack of discipline, and he made his point by being harsh with my son when we were in his office.
By three, his hyperactivity was so severe we sought help from a family counselor who insisted we go to a psychiatrist for medication (which we chose not to do).
When my son was four, he got sick. He had a persistent respiratory infection that lasted for weeks, with a fever that came and went. Once it finally eased, new behavioral symptoms had emerged. Really scary, concerning behaviors.
My son had become violent and aggressive. He was combative and defiant. And he had developed motor tics like blinking excessively and making a heavy breathing sound in the back of his throat.
I later learned that the emergence of these symptoms following an illness is the hallmark of PANDAS syndrome.
(PANS [Pediatric Acute-onset Neuropsychiatric Syndrome], is closely related, and is the generally recognized label for the same symptoms in a child without the association of a strep infection.)
ADHD, SPD, and Aspergers, Oh My!
As my son got older, his symptoms only got worse. We would get his symptoms to go away, only to have them pop back up again. Our lives revolved around his never-ending emotional roller coaster.
Thankfully, we were already on a holistic path at this time, and my son was eating whole foods, free from food dyes and other artificial ingredients. (Read about the five ingredients you should remove from your child’s diet to reduce inflammation and begin the healing process here.)
Though a healthy lifestyle helped with his symptoms, they persisted, and I began to see a pattern.
Clearly, he had ADHD. The kid couldn’t sit still for any length of time, or keep his hands to himself, much to his brothers’ disdain. But he also had all these other symptoms that crossed over many diagnoses.
He had symptoms of Aspergers, as he would obsess over subjects and had trouble in social settings and making friends.
He had symptoms of sensory processing disorder, as he couldn’t stand the feel of certain fabrics, and became easily overwhelmed in certain settings.
He had symptoms of oppositional defiant disorder, as he seemed to rebel against any perceived authority, and during what I call an “episode” (which was usually the result of him getting his hands on gluten or food dye), he became completely unreasonable, angry, and aggressive, and no amount of discipline could pull him out of it.
He also had symptoms of bipolar, obsessive compulsive disorder, anxiety, and a host of other mental disorders.
PANDAS Syndrome: The Holy Grail of Behavioral Disorders
After years of trying to figure out and treat my son on my own, we forked over the cash to see a holistic physicians assistant. He proved to not be a big help in the long run, but he did help us gain one bit of key information: through stool testing, we found out my son had strep bacteria overgrown in his gut.
I researched like crazy and all signs pointed to a little known disorder caused by strep bacteria: PANDAS syndrome (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
PANDAS is essentially a variety of psychiatric disorders caused by a strep infection that settles in the brain. (Read our family’s whole PANDAS story here.)
How does strep cause psychiatric conditions?
When the immune system is not functioning correctly, a strep infection can go from being an ordinary childhood illness to a long-lasting disease.
In PANDAS children, the infection passes the blood brain barrier, resulting in brain swelling (aka encephalitis) and, eventually, causing the immune system to attack the brain, making the condition auto-immune in nature.
PANDAS syndrome causes a variety of symptoms which masquerade as mental illness. Some of these symptoms include:
- obsessive compulsive disorder
- oppositional defiant disorder
- rage or aggression
- motor tics
- bipolar disorder
- hyperactivity/inability to focus (ADHD/ADD)
The truth is that many, many children are diagnosed with autism spectrum disorder, ADHD, or any number of behavioral, developmental, or mental disorders, when, in reality, they may have PANDAS, and PANDAS syndrome is treatable!
Treating PANDAS Syndrome
Treating PANDAS syndrome is no simple task, but it can be done, especially if you are able to find a doctor who is actually familiar with the disease. Truthfully, many doctors still deny its existence.
That doesn’t mean there isn’t hope.
Our family has made huge progress with a healing diet and by using a variety of herbs and supplements.
But strep, the underlying cause of PANDAS, is cantankerous and persistent, and we’ve had symptoms return from time to time. Thankfully, we’ve found a wonderful doctor who specializes in the disorder who is currently treating my son with both natural and conventional methods.
I always thought that we would never use antibiotics again and I’d be able to use herbs for everything for the rest of our lives, but I have no problem employing the best of both worlds because PANDAS is a nasty disease and you gotta do what you gotta do.
Is PANDAS Syndrome The Cause of Your Child’s Behavioral or Developmental Disorder?
If your child has any of the above symptoms (or ALL of them, like my son), PANDAS is a very real possibility, and definitely worth looking into.
Parents of children with behavioral and developmental disorders are usually not given much hope. Most doctors want to medicate kids in order to keep symptoms under control.
But that doesn’t have to be the story for your child. As a parent, you must fight and advocate for your child, and if you think there’s more going on, you can help your child!
It was such a relief when we found our doctor and he confirmed that my son had PANDAS. All the years of me feeling like a failure at parenting my child began to melt away.
Know that your child’s behaviors may be out of both of your control, and you can help your child heal!
Ways you can help your child:
- Find a PANDAS specialist near you. Search this list for US providers, and this list for international providers.
- Join support groups. (You can also join my group Heal Together Community, where we talk all things natural health & healing.)
- Make sure your child is on a whole-foods diet, free from artificial ingredients, and preferably no gluten or pasteurized dairy (both huge triggers for my son).
- Research alternative treatment options. Read about alternatives to ADHD meds here, our holistic approach to oppositional defiant disorder here, and treatments we’ve used for PANDAS here.
Never stop fighting for your child to have the life he/she deserves, and never lose hope because healing can and does happen!