PANDAS: A Rare Childhood Disease That Causes OCD
As any of us suffering from it could tell you, OCD is a terrifying and painful disease. Most of the time, though, it comes on gradually. Children or adults who start experiencing symptoms are usually able to hide it for a while, trying to perform their compulsions in secret. Little by little, the people around them catch on, and – hopefully – help them get the treatment they need. Even still, this experience can be incredibly frightening for parents.
Now, imagine if your child displayed absolutely no OCD behaviors whatsoever on Friday. They are a happy, calm kid. Then, on Saturday, they wake up screaming, with intense obsessions, ritualistic behaviors, and even tics like jerking their head around uncontrollably. They start wetting their bed out of nowhere, and displaying intense separation anxiety when they didn’t experience that before.
This is exactly what parents experience when their child develops a rare disease called PANDAS. Here, we’ll tell you everything there is to know about PANDAS, and what to do if you think your child is suffering from it.
What is PANDAS?
PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a childhood disease that is thought to cause serious and often debilitating psychiatric symptoms. Researchers have hypothesized that the disorder is related to the body’s reaction against strep bacteria, and usually appears between age 3 and puberty.
PANDAS: A Primary Cause of Acute-Onset OCD
Many scientists have tried to pinpoint the exact cause of OCD, and what we understand now is that it’s probably caused by a combination of genetic, biological, and environmental factors. One cause of OCD that isn’t very well-known in the general population, however, is PANDAS, a childhood disease that could cause sudden-onset OCD.
The PANDAS Network approximates that 1 in 200 children in the United States may get the disease, and that it may account for up to 25 percent of children with OCD, tics, or Tourette’s Syndrome. Some other reports state that over 80% of acute-onset OCD, in which symptoms appear suddenly and even overnight instead of gradually, can be attributed to PANDAS.
This is clearly a serious disease, and one we need to pay attention to, especially as OCD experts. OCD is scary enough on its own, but when it comes on severely and out-of-the-blue, it can be even scarier.
What Are the Signs of PANDAS?
When a child has PANDAS, they suddenly develop symptoms of OCD, tic disorder, or Tourette’s Syndrome. People describe it as seeing their child change overnight; one day, the child is well-adjusted and has no symptoms of mental illness, and the next they’re suffering from intense anxiety, irritability, intrusive thoughts, and repetitive or compulsive behaviors. These symptoms come on very closely after having a strep infection, like strep throat or scarlet fever.
Some specific signs of PANDAS to watch out for are:
- OCD symptoms, like intrusive thoughts they can’t get out of their minds (an obsession) or an urge to repeat an action over and over again (a compulsion)
- Tics, or sudden movements or sounds that seem out of the child’s control (like grunting, incessant blinking, or jerking the head)
- Intense anxiety and moodiness
- Constant screaming and irritability
- Severe separation anxiety
- Increased bed-wetting, accidents, or daytime urination
- Signs of diminished fine motor skills, like their handwriting getting sloppy suddenly
- Visual or auditory hallucinations
- Symptoms of anorexia or another eating disorder
- Symptoms of ADHD like impulsivity, hyperactivity, and trouble focusing
- Regressive behaviors; acting younger than their true age and reverting back to behaviors that they’d grown out of, like baby talk or sucking their thumb
- Inappropriate laughing
- Joint pain
- Difficulties sleeping
Remember that any of these symptoms needs to come on suddenly, and after a recent strep infection, for PANDAS to be considered as a diagnosis. If the child already suffered from OCD before the strep infection and the symptoms suddenly got much worse, that could also be a sign of PANDAS.
Of course, not all of these symptoms will be present for every child who has PANDAS, but it’s a comprehensive list so that you can know what to watch out for if your child is exhibiting unusual mental health symptoms out of nowhere.
What Causes PANDAS?
Have you ever had strep throat? You probably have, at least once as a child. As painful as strep throat infection is on its own, it can lead to even worse, more lasting effects: the development of PANDAS. PANDAS is thought to be caused when strep bacteria invade a child’s body, causing the painful throat infection that we all remember. The body’s immune system tries to fight the foreign bacteria off by producing antibodies – as healthy bodies are designed to do.
The problem is that, with PANDAS, the infection causes these antibodies to not only attack the strep bacteria but the body’s healthy cells as well. Some of these antibodies start to target and attack the brain, which leads to an inflammation of the basal ganglia – the area of the brain that’s responsible for regulating motor and premotor skills, among other things. This, in turn, leads to the symptoms of OCD or tics.
Why the antibodies attack healthy cells in the first place has a fascinating explanation. Strep bacteria survive in the body by mimicking other, healthy cells – that’s why a strep infection can go undetected for so long. Eventually, of course, the body’s immune system wises up, realizes that there are intruders in their midst, and starts attacking. However, the immune system’s antibodies can sometimes have trouble differentiating between the actual strep bacteria and the healthy cells they were mimicking – which leads them to attack the healthy cells as well.
Although the diagnosis of PANDAS, by definition, requires the presence of a strep infection, there are other similar disorders that can be caused by non-strep infections like Lyme disease, mononucleosis, and the H1N1 flu.
How Do You Test for PANS or PANDAS?
Unfortunately, there is no physical test – for example, a laboratory test or an X-ray – that doctors can conduct to test conclusively for PANDAS. At the time, the only way that a doctor can “test” for PANDAS is to look closely at the diagnostic criteria of the disease and compare it to the child’s symptoms. It’s diagnosed by completing a thorough assessment of the child’s current symptoms, testing for the presence of strep bacteria, and examining their complete medical and psychiatric history.
The specific diagnostic criteria that have so far been used for PANDAS are:
- Presence of OCD, a tic disorder, or both
- Symptoms appeared between age 3 to puberty
- OCD or tic disorder symptoms are episodic in severity, meaning that they get suddenly worse after the infection, and gradually improve over time
- The child has been confirmed to have had a group A Beta-hemolytic strep infection
- The presence of neurological abnormalities, like jerking or sounds that aren’t in the child’s control (tics)
- Symptoms appeared or worsened dramatically and abruptly
All of these criteria need to be met for a child to qualify for the diagnosis of PANDAS (as opposed to OCD or another behavioral health disorder). That means, for example, that if the child is acting differently but isn’t showing symptoms of OCD or tic disorder specifically, or if the child never had a strep infection, then it isn’t PANDAS. The presence of strep bacteria is pretty simple to test for if the infection is active; the medical provider can usually just complete a throat swab or an antibody test. If it’s been over a week since the child started presenting with OCD symptoms, some blood work might be required to confirm that strep bacteria was recently in the child’s system.It’s worth noting, though, that even if your child hasn’t had strep, they could still be suffering from a larger category of autoimmune diseases called pediatric acute-onset neuropsychiatric syndrome, or PANS: very similar to PANDAS, but without the strep. PANS can be caused by different types of infections like mononucleosis or Lyme disease on top of other, unrelated causes.
My Child Had Strep Throat. Should I Be Worried?
A parent’s natural inclination is to worry, and we understand that. However, just because your child has had strep throat does not mean that they are at risk for PANDAS. Almost everyone gets strep at some point in their lives. If your child didn’t start displaying any of the above signs suddenly after they had strep throat, it’s very unlikely they have PANDAS. If they do start displaying these behaviors, talk to a doctor.
Is it PANDAS or OCD?
If you’re a parent with a child who’s been diagnosed with OCD, you might be raking through your memory trying to remember if they had strep throat around the time their OCD symptoms started. Could it have been PANDAS?
To be clear, PANDAS causes OCD; so it isn’t a matter of if it’s PANDAS or OCD, but rather if it’s OCD caused by PANDAS or OCD caused by other factors (like genetics or other environmental risks).
There isn’t an easy way to accurately differentiate between PANDAS-related OCD and “regular” OCD, which is partly why there is little information available on exactly how many people with OCD developed it because of PANDAS.
OCD looks like OCD whether it’s caused by PANDAS or not: in both cases, the child may experience intrusive, anxiety-provoking thoughts, an urge to check things or complete behaviors over and over again, or tics. In both scenarios, the child will also probably experience depression, irritability, and other mood changes that often come along with OCD.
While it can be hard to tell them apart, there are some key characteristics of PANDAS that aren’t apparent in non-PANDAS OCD. Consider the following:
- Did the child have a strep infection? This is a key point to consider. If the OCD symptoms came on without the child having recently had a strep infection, then it’s not PANDAS. However, this doesn’t help eliminate other, similar causes of OCD, like PANS.
- Did the symptoms come on suddenly? Non-PANDAS OCD can come on suddenly as well, but typically, kids tend to feel ashamed about their symptoms and can hide them for quite some time. PANDAS OCD comes on dramatically and abruptly. Parents have described it as having a different child overnight – as if their child were possessed by a demon. If this wasn’t your experience with your child’s OCD, then it may not be PANDAS.
- Is there an episodic course of symptom severity? Kids and adults with non-PANDAS OCD have good days and bad days; the severity of their symptoms tends to go up and down over time. Children with PANDAS experience a severe and abrupt spike in symptoms in the beginning (following infection), and it gradually gets better as the infection is treated. Another infection might bring about another spike in symptoms.
The only way to know for sure whether or not your child has PANDAS or non-PANDAS OCD is to talk with your medical provider. If you suspect either of these disorders, it’s imperative that your child gets the appropriate treatment right away.
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PANDAS and OCD: Available Treatments
The good news is that both PANDAS and non-PANDAS OCD are treatable conditions. With a combination of medical and psychiatric treatments, it’s possible for your child to stop suffering.
Can PANDAS Disease Be Cured?
Most children recover from PANDAS without any long-term effects. Some might experience flare-ups of symptoms moving forward, but these can usually be managed by subsequent rounds of treatment.
Usually, the first-line treatment when there is a PANDAS diagnosis is to treat the underlying strep throat infection. Even if the strep bacteria is still hidden (and isn’t causing any symptoms of strep throat), there are ways to test for the presence of bacteria.
A single course of antibiotics is usually enough to get rid of an active strep throat infection; if the bacteria is still hidden, more antibiotics might be needed. After the culprit is finally gone, the behavioral PANDAS symptoms will usually start to go away as well. Some children experience immediate relief after taking antibiotics. Others may need a longer course of antibiotic treatment.
Another possible course of treatment, if symptoms don’t go away or if there are continued flare-ups, is intravenous immunoglobulin, or IVIG. Since PANDAS is hypothesized to be an autoimmune disorder (in which the immune system is acting inappropriately by attacking healthy brain cells), this type of treatment might be called for. IVIG is made of healthy blood plasma, which can help regulate the immune system.
Another option for this type of treatment is plasma exchange (in which the child’s blood plasma is drained and replaced). These types of invasive treatments are inherently risky, and are only recommended for severe cases that don’t improve with antibiotics and psychological treatments.
Treatment for OCD Symptoms
Even with antibiotics treating the strep infection, the OCD symptoms usually need to be treated separately. Thankfully, there are effective evidence-based interventions, like the ones we use here at Impulse Therapy, that significantly reduce or even eliminate OCD symptoms. The antibiotics get to the root of the problem, and behavioral interventions for OCD can ease the child’s suffering.
One possibility for psychiatric treatment is a class of antidepressant medication called selective serotonin reuptake inhibitors, or SSRIs. SSRIs have been shown to be helpful in controlling both the intrusive thoughts and compulsive behaviors that OCD causes.
The gold standard in behavioral treatment for OCD is a specific type of Cognitive Behavioral Therapy called ERP, or Exposure and Response Prevention. ERP guides people with OCD to face their obsessional fears (instead of avoiding them) and sit with the anxiety they bring. They are asked to resist the urge to respond to the obsession with a compulsion, or a repetitive or ritualistic behavior that’s intended to try to lessen their anxiety. ERP has been found to be the most effective therapeutic intervention for OCD.
The combination of SSRIs and ERP is helpful for children with PANDAS or classic OCD. Whether your child has PANDAS or non-PANDAS OCD, it’s important that you find a qualified mental health practitioner who is specialized in treating OCD. Keep in mind that many people claim to treat OCD, but unless they’re trained in delivering ERP, then whatever treatment they’re providing is unlikely to be effective.
What Happens if PANDAS Goes Untreated?
If your child has PANDAS, it’s critically important that they receive treatment; the longer you wait, the worse things will get. Neither PANDAS nor strep infection will go away on its own; antibiotics, behavioral interventions, and sometimes, more serious treatments like plasma exchange, are the only way to battle PANDAS and the underlying strep infection.
If left untreated, PANDAS could cause serious and permanent cognitive damage and become a chronic autoimmune condition that your child faces for the rest of their life. If your child is displaying symptoms of sudden-onset OCD, talk to your doctor immediately. The PANDAS Physician Network is a good place to start looking for a provider who specializes in treating PANDAS and PANS.
OCD is an incredibly painful disease, no matter what the cause. Whether it’s PANDAS or classic OCD, these symptoms can quickly wreak havoc on lives when they’re left untreated.
Learning about the symptoms of OCD and why you (or your child) are feeling the way you do can be confusing and overwhelming. At Impulse Therapy, we deliver evidence-based, self-guided audio lesson plans to both help you understand this disorder and learn techniques to help you fight it. You can read more information about our program here.