I was introduced to this condition last week through a Facebook group. A mother shared how she lost her son to this dreadful disease called PANDAS. Everyone in their family was shocked and confused when he took his life and later on, his panel results aided medical professionals to conclude that his death was in fact a result of PANDAS.
I had no idea that a condition like this even existed. I showed the post to my parents and they had never heard of it either. This is when I decided that I had to write about it and help others understand that suicides can be linked back to this disease.
What is PANDAS?
PANDAS is short for “Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections”. It is an autoimmune disorder which is prevalent in children and can lead to frightening behaviour.
This is a rare condition. It is believed that approximately one in 200 children are affected, according to PANDAS Network, a research non-profit for the disease.
So many of us don’t seem to know about this condition which has consumed so many kids. It is especially important for parents to educate themselves so that they can help their children by recognizing the signs.
What causes PANDAS?
The exact cause of PANDAS is the subject of ongoing research. It appears to be an autoimmune disorder. When you have an autoimmune disease, your immune system starts attacking its own body, in this case, cells in the brain. The strep bacteria disguise themselves to look like normal cells. When the immune system eventually finds and fights them, it sometimes also fights the cells that the strep is imitating.
What are the symptoms?
A child may be diagnosed with PANDAS when:
- Obsessive-Compulsive Disorder (OCD), Tic disorder, or both suddenly appear following a strep infection, such as strep throat or scarlet fever.
- The symptoms of OCD or Tic disorder suddenly become worse following a strep infection in children who are already suffering.
OCD causes thoughts that you can’t put out of your mind, or an urge to repeat certain actions over and over while Tics are sudden movements and sounds that a child will repeat over and over. They may grunt, jerk their head a lot, fidget too much. These are urges that they can’t control.
Other symptoms include:
- Symptoms of ADHD, such as hyperactivity and trouble paying attention
- Anxiety attacks or fear of being away from parents or other caregivers (separation anxiety)
- Behaviour they’d previously grown out of, like temper tantrums, aggression or baby talk
- Moodiness, irritability, and crying or laughing at inappropriate times
- Sensory problems, including being very sensitive to light and possibly seeing or hearing things that aren’t there
- Sleep disturbances
- Changes in motor skills such as changes in handwriting
- Emotional and developmental regression
- In extreme cases, suicidal thoughts.
This disease is highly dramatic and can happen overnight following a strep infection turning your child into a completely different person.
How is PANDAS diagnosed?
No single test can confirm if a child has PANDAS. It requires a clinical diagnosis which means that there are no lab tests that can diagnose this disorder. In order to make the diagnosis, the paediatrician will look at the symptoms and rule out other conditions that could be causing them. Keep in mind that this condition is not easy to diagnose as many different things can cause symptoms similar to that of PANDAS.
What is a must is a test for the strep bacteria. If it doesn’t show up after a throat swab, the doctor should check other places strep tends to hide, like the sinuses or the child’s bottom and genitals.
NOTE: If the child doesn’t have strep, he doesn’t have PANDAS.
But he might have some other autoimmune infection which could be causing these symptoms. PANDAS is part of a larger group of autoimmune diseases that affect the brain called paediatric acute-onset neuropsychiatric syndrome (PANS). The symptoms are similar, but they may be triggered by something other than strep.
So, never rule out any possibility.
Could an adult develop PANDAS?
PANDAS is a paediatric disorder and typically first appears in children between the age 3 through puberty. Reactions to strep infections are rare after age 12, but researchers recognize that PANDAS could occur among adolescents as well.
What are the treatment options?
The good news is that PANDAS can be treated and though it may take time, most children who have PANDAS recover completely with treatment. Treatments include:
- Antibiotics – The most effective way to treat PANDAS is to treat the strep infection with the help of antibiotics. To help avoid re-infection, replace the child’s toothbrush right away and again when they finish their full course of antibiotics.
- Anti-inflammatories – These drugs are used to calm the immune system and can help cure PANDAS.
- Cognitive behavioural therapy – While medications fight the infection, therapy can help control the OCD. A therapist will give the child strategies and tips to deal with such thoughts and fears. It’s important for parents to learn what goes on in therapy so that they can help their child apply it at home.
- Depression medications (Antidepressants) – Antidepressants are used to control the child’s depression and help them cope. In some cases, therapy alone may not suffice and hence antidepressants are recommended.
- Blood plasma exchange – Some severe cases of PANDAS might not respond to medications and therapy. If this happens, a blood plasma exchange to remove the faulty antibodies from their blood is sometimes recommended.
Why is it important to talk about this disorder?
- Symptoms of PANDAS can leave the child unable to function at school or in social situations.
- If it goes untreated, the symptoms may continue to worsen and can result in permanent cognitive damage.
- For some children, PANDAS can become a chronic autoimmune disorder.
This is why early diagnosis and treatment is very important.
Suicidal obsession as a result of PANDAS:
Suicidality has been reported in 40% of the patients who are diagnosed with PANDAS. Impulsive dangerous behaviour (60%), homicidal ideation (19%) and life-threatening violence (14%) are also reported.
A study was conducted which focused on a 9-year-old girl who was seemingly obsessed with wanting to kill herself. She offered no reason for wanting to die but said that the thought kept coming in her mind. She believed her thought to be her own and that she was not able to get away from it. She appeared preoccupied in her thoughts, would delay in giving response to anything asked and looked perplexed. She had already attempted to kill herself a few times but was discovered by family members. This is an example of obsessive-compulsive behaviour – in this case suicidal obsession.
During my research, I also came across a press release which brought me to tears, a 13-year-old boy took his own life on Christmas Eve in 2016 because of this sinister disorder. His mother says her family struggled for years to get him the proper diagnosis and treatment but the problem is that we lack proper providers. Even medical practitioners don’t seem to know about this condition, are sceptical and hence, turn a blind eye.
Another father believes this disease to be a monster that consumed his 10-year-old son. It was quite sudden and happened overnight. He went from being a rambunctious and outgoing boy to having odd tics and strange moodiness. For months, he had seizures and was dealing with debilitating anxiety, rage, suicidal actions and depression. He experienced a loss of his fine motor skills and a loss of appetite. He lost weight and eventually lost the ability to speak for more than four months.
“Oftentimes for days on end he would be reduced to a crying ball in a corner of his room, unable to speak, interact or function. Huge tears would flow down his cheeks for hours, day after day, as he cried out in his mental agony. It is a nightmare the likes of which we never knew existed. Our lives were turned upside down in an instant and everything we knew had changed. We battled disbelief, confusion, disinformation and the realisation that we were in for the fight of our lives.” his father said.
The most notable aspect of PANDAS is the child feeling like his mind has been hijacked. It is described as a possession disease. It’s affecting so many children, driving them to the brink and yet a lot of doctors are skeptical.
PANDAS is complicated and frightening. It is not a straight line of recovery but it is a reality for so many kids and parents around the world. We should be talking about it.