Obsessive clinginess, aggressive outbursts, repetitive blinking, and new problems popping up at school? If you’re nodding YES and looking for answers, read through this PANDAS symptoms checklist. It will help you figure out whether or not your child has PANDAS. And if so, where to start after a PANDAS diagnosis.
What is PANDAS?
According to Margo Thienemann, MD at Stanford University, PANDAS is defined by the sudden loss of appetite and the onset of an obsessive-compulsive disorder, otherwise known as OCD.
A PANDAS child must also show symptoms from at least two of the following categories:
- Mood swings
- Irritability or aggression
- Poor performance at school
- Sensory abnormalities
- Sleep disturbances, bed wetting, or needing to pee frequently
One of the things that sets PANDAS apart from other forms of OCD like PANS (pediatric acute-onset neuropsychiatric syndrome) is that it’s triggered by an infection.
Specifically, a group A streptococcal infection.
Strep throat is the most notorious type of infection caused by group A strep. But there are other infections that can show up on the skin or along mucous membranes.
When trying to put the pieces together, it may help to know that group A strep can manifest as:
- Strep throat: An infection at the back of the throat, including the tonsils. It can show up as fever, sore throat, red tonsils, and enlarged lymph nodes.
- Impetigo: And infection of the skin. Shows up as yellowish crusty sores on the face, arms, or legs.
- Vaginitis: Inflammation of the vagina. Includes signs like itching, burning, pain, and discharge.
- Sinusitis: A sinus infection. Shows up as thick mucus in the nose or a plugged nose. There may also be fever, headaches, and a sore throat.
Note: Group A strep triggers PANDAS. It does not cause it.
Just because your child acquires a group A strep infection, this does not mean that it will automatically lead to PANDAS.
The following symptoms can also manifest in PANS as well, as the symptoms of PANDAS and PANS are generally the same, though the underlying causes are different.
A major hallmark of PANDAS syndrome is a sudden, acute onset of psychiatric symptoms, although it should be noted that some children do experience a slow decline. These psychiatric symptoms most frequently emerge following an illness like strep throat, though keep in mind that other infections and environmental triggers make provoke symptoms.
Your PANDAS symptoms checklist
If your child shows PANDAS symptoms that pose a risk to safety, you may want to seek immediate support. This includes physical violence, aggression, refusal to eat or drink, and suicidal behaviors.
It’s also important to note that no two PANDAS cases are the same. Your child may need very different care than another child.
What’s more, the come-and-go nature of PANDAS symptoms means that you will need to make periodic adjustments as your child gets better and appears to “relapse.” Symptoms might also change from one to another – for example, they might move from severe anxiety to aggression or depression.
This is to be expected. It’s not a failure of PANDAS remedies or of the parent.
Because PANDAS symptoms are never stable, be careful not to “chase” the illness and react with new therapies, new drugs, or higher dosages.
1. Sudden loss of appetite
A sudden refusal to eat or drink is a classic sign of PANDAS, even without OCD symptoms.
In this case, it’s important to focus on nutrition while addressing underlying inflammation. A shift in diet is typically necessary.
Click here to find out more about an anti-inflammatory diet for children.
Some PANDAS children may feel afraid of choking or vomiting. If this is the case, breathing and relaxing techniques can help.
As many as 70% of those with PANDAS develop tics. Common tics include eye blinking and throat clearing.
PANDAS children with tics are more likely to have a poorer performance at school, trouble with handwriting, a hard time with memory, and lower self-esteem.
In some cases, a therapy called habit reversal training can help get rid of tics by teaching the child to stare or look up during a blinking tic or practice slow, rhythmic breathing for vocal tics.
Anxiety, particularly separation anxiety, is found in most PANDAS patients. According to Dr. Margo Thienemann, over 90% of patients show signs of separation anxiety.
This means excessive anxiety when away from home or when away from a parent.
While entirely normal and healthy for small children ages 6 months to 3 years, separation anxiety in older children or adults raises a red flag.
This anxiety can be so severe that it interferes with you and your child’s day-to-day activities.
4. Mood swings
Mood swings and depression are common in a PANDAS child during the later stages of illness.
Depression can sometimes be the result of ongoing pain.
There are two types of pain in PANDAS children: arthritis and pain due to how the body processes sensations.
When a PANDAS child experiences pain, there’s often an increased sensitivity to light, sound, and smells. There might also be tummy pain, headaches, muscle aches, daytime tiredness, and brain fog.
With touch, you may find areas of tenderness that follow the same distribution as fibromyalgia.
5. Irritability or aggression
Irritability and unprovoked violence can be the most difficult on the PANDAS symptoms checklist because this type of behavior puts you or your child in danger.
As with mood swings and depression, sensory sensitivities, fatigue, and trouble understanding the environment can make a child feel vulnerable and aggressive.
Angry meltdowns can last for 45 minutes to an hour or longer. Typically, once the rage passes, your child is “back.”
Your child might feel remorse or not remember the episode at all.
In the moment, punishment is the last thing that you want to do. The best thing you can do is distract your child – if possible – and wait for the episode to pass.
Keeping a calm home environment without a lot of stimulation or demands can also help.
6. Poor performance at school
In a set of guidelines published in the Journal of Child and Adolescent Psychopharmacology, Dr. Margo Thienemann explains that many children with PANDAS need some sort of accommodation at school.
Often these kids feel challenged (and challenge their teacher) with PANDAS symptoms like:
- Handwriting difficulties
- Trouble paying attention or staying focused
- Difficulty with math
- Memory issues
- Physical pain (more on that below)
- Frequent absences
Hyperactivity may be caused by anxiety, a complex tic sequence, feeling tired, sensory overload, or the urge to pee.
The inability to focus in school might be caused by lack of sleep, mood swings, intrusive thoughts, or “brain fog.”
If you suspect PANDAS or have received a PANDAS diagnosis, there are some things that parents and teachers can do together to help a PANDAS child.
- Excuse absences and dismiss required makeup work or tests
- Allow the parent to be in or near the classroom
- Excuse the child from activities and approve alternative methods, like typing rather than writing and erasing or listening to audiobooks
- Work with the frequent need to pee and allow the child to leave without asking permission
- Have a notetaker in class, enlarge worksheets, use large grid paper, allow a keyboard or voice recorder
- Permit the child to use a calculator and times table
- Encourage rest periods during the day and less homework
A PANDAS child’s needs change from day-to-day. As PANDAS symptoms improve, parents and teachers can work together to shift the level of support available at school.
Note: many parents to choose to pull their children out of public school in order to homeschool after PANDAS symptoms begin to crop up. This can be an excellent choice for some children if you’re in a position to do so.
7. Trouble sleeping
Trouble sleeping is often interwoven with PANDAS symptoms.
For example, sleep trouble may be the result of separation anxiety or OCD bedtime rituals.
Bed wetting, nightmares, and sleep apnea from enlarged tonsils can also interfere with sleep.
REM sleep behavior disorder is also common in the PANDAS child and is linked to an inflamed brain.
With REM sleep behavior disorder, your sleeping child might act out his or her dreams. This could involve screaming, shouting, laughing, crying, kicking, punching, or getting out of bed.
Sometimes a solid bedtime routine is enough to improve sleep. This includes:
- A regular bedtime, even on weekends
- A consistent and pleasant set of activities before bed
- A cool, dark, and quiet place to sleep
- Zero caffeine, high-energy play, or heavy meals before bedtime
- No electronic games, television, or screens before bedtime
Each case and each child is different.
Your child may exhibit a combination of the above symptoms, or variations. You may be certain the symptoms emerged following a strep throat infection, or you may be unsure of exactly when or why they began. Regardless of the trigger, if your child exhibits any of the above symptoms, it’s worth further research to see if PANDAS or PANS might be at the root of your child’s behavior. Once you have a better idea of what you’re dealing with, your child will have a much better chance of recovery.
This was such an interesting read, thank you. Can I ask wether a child could be high-functioning with PANS or PANDAS? My two show many of the symptoms you describe, but do well in their studies (both top sets in school but, but are a bit “scattered” for want of a better word), both behave well etc but when home they can have outbursts of aggression etc just as you describe. They seem able to hold it in till home in their safe space. I hope that makes sense? Just wondering if this sounds possible with this diagnosis?
Yes, definitely. In fact, it very common for children with PANDAS/PANS to have good behavior at school but fall apart at home.