PANDAS and PANS are clinical diagnoses that are strongly based on symptom presentation. OCD is a primary symptom, yet not many parent understand what OCD is or what it looks like in everyday life.
When parents think of OCD, they assume it means their child is washing their hands every few minutes and is scared of dirty things. It is much more complicated than that.
Below are some examples of what OCD may look like in a young child. We invite you to read the examples and also fill out the PANS/PANDAS SYMPTOM SCALE. These tools will help you present your child’s onset to your physician.
Often, if a child is unable to fulfill the urges or “needs”, they may become physical, cry, scream, or incessantly worry and not be able to focus on anything else. This is not a typical tantrum. Many use the word MELTDOWN.
Please remember that reprimanding a child for OCD actions will probably not help. Some parents have noted that the OCD tendencies improved a little over time without any intervention, therefore, they thought it was not a real issue. It may appear that things have improved, but it may have been replaced by a new OCD tendency, the child may be having internal thoughts and fears, or the child may have learned to hide his/her OCD. Even at a very young age, they can learn to hide what they feel they “must” do.
In the case of PANDAS and PANS, the root cause that is creating these urges and thoughts (a misdirected immune response) must be addressed.
Obsessive hand washing, due to fear of germs or stickiness or chemicals.
Obsessive need to pee
Not feeling clean enough after using bathroom – compulsion of obsessive wiping.
Brushing teeth for a long period of time
Inability to eat certain foods previously liked – may not be able to give a reason why
Refusal to brush teeth, bathe, or change clothes
Fear of germ or chemicals
Worry of choking on food (can be OCD related or swallowing issue)
Inability to touch certain things, such as food, clothing or toys that were previously loved
Repeating sounds others make
Obsessive concern about throwing up ( can also be the result of swallowing issues)
Avoidance of certain places or people or things
Refusal to touch other children when playing games like tag
Inability to use public restrooms or bathrooms at school or friends homes.
If they all of a sudden ask you to wipe them in the bathroom when they have been self sufficient for awhile.
Breathing off to the side -indicating the air in front of them is contaminated
Having to get their own utensils. Keeping utensils separate from others
Aversion to glue, glitter, etc. (this could be sensory or OCD)
Insisting on certain cup / straw / plate- to the point that it is that or nothing
Walking with closed fists
Wiping hands on pants over and over after touching something.
Needing to spin or shake after doing something like passing a specific person or a certain room
Needs to get their own food
Needs to eat self contained foods like cheese in a wrapper, applesauce from a single serve container
Hoarding spit or not wanting to throw out tissues or similar
Refusal to hold a parent’s hand crossing the street or in parking lot. Many cover hand with sleeve first
Repetitively saying certain things, or asking others to say things in specific ways, tones, etc.
Lining up things such as toys or pencils.
Repetitively touching certain things
Inability to put hands in certain positions
Going in and back out of doorways
Turning light switches on and off over and over again
Insistence on a certain order of events (if not done in specific order, must restart everything)
Putting together sets of items
Insistence on a certain order of events (such as reading certain books in only a certain order)
upset that they can’t stop blinking or breathing and trying to stop
Saying goodnight has to be done a very specific way. If you vary it, the anxiety rises and they need you to start over
Pushing chair in until it is just right, then making sure the chair is “even’. Sit, fix chair. * Look left, look right. Make sure it’s even
Can’t cross over numbers when using calculator/computer…my son is in GT Algebra class and it took him six hours to complete a test because he can’t “go across/over numbers”. He must move his hand around the calculator to the numbers on the outside first and if he touches another key he must start again…same thing with letters on the computer.
breathing in before reading each new sentence..
can’t sit on lines in carpet
Fussing with plate until just right. He’d turn and twist it until it was the way he needed it to be
Eating problems as a result of being unable to disengage from compulsive behaviors. My daughter is lining things up- I can spoon feed her during it, but she will not come away from it to eat or feed herself.
Has to tell you when to stop pouring a drink. The drink needs to be at a certain level
Messing with seat belts over and over
Wear the same clothes over and over
needing games to be played perfectly, played by different rules, or being unable to lose
Constantly asking for reassurance on the same/similar topic
Inability to make a previously simple decision for fear of consequences
Checking doors to make sure they are locked
Constantly changing mind- fear of wrong decision
Perfectionism – often seen in erasing work until the paper rips
Asking permission so the decision is not their responsibility
Repeating back what the child says because they need to make sure you heard them – can be reassurance
NUMBERS AND COLORS
Fixation on a certain number – such as needing to do, repeat, touch something 7 times.
Fixation on a certain number as being bad
Needing a parent to say certain things an amount of times before a task is complete
Child would fill up an entire piece of paper just writing “4” over and over until there was no room left. Open the fridge and can’t pick something out until he counted to “4”. Had to say good night 4 times.
“Favorite” color- had to wear the same Red PJs everyday, only color with red crayon (if the crayon would break it would result in crying for SEVERAL hours- only that particular red crayon would do)
WORRY ABOUT SELF HARM & HARM TO OTHERS
Worrying about one of their actions causing harm to another
Inability to separate from a parent or authority figure.
Extreme worry about weather or robbers
Every safety message we’d ever sent turned into a crippling fear eg. never put plastic bags over your head became a terrifying fear of anything plastic touching her face, not wanting to go near plug sockets, worrying that bath water will be too hot.
If someone in the family gets hurt, they need reassurance over and over it will not happen to them. ie. someone break a toe….the child then asks multiple times a day…Is my toe broken?
Fears that someone was going to die
Fears that a monster was going to get them
Need to confess “bad things” such as unkind behavior
Feeling that they have cheated on tests or in school
Worry about being “bad”
Obsessive confessing (in stated or written form) often for no apparent reason
Needing to obsessively pray -if they do not pray something bad will happen
Obsessive magical thinking – if I think it, it will happen
Unable to read or write certain numbers or letters. If they read or write it, something bad will happen.
Refusing to throw out odd things
Keeping spit in the mouth, wanting the strep swab back from the doctor office, wanting the blood sample back from the lab. They need their bodily fluids in their own possession.