Below is a post compiled from many parent’s experience of OCD in a PANDAS child. Since these behaviors are rarely discussed at the bus stop, and most parents are unaware of the actual manifestations of OCD beyond hand-washing, we thought we’d list some here. We are not doctors or therapists, so these are just our parental thoughts.
In order to be diagnosed with PANDAS a child must be diagnosed with OCD or a tic disorder first and foremost. In order for a child to be diagnosed with OCD, Obsessions and Compulsions (or Rituals) need to take up at least 1 hour of the child’s day. Many doctors are unaware of the symptoms of OCD, and will not be able to recognize the behaviors. If some of the below is severe enough to impact your child’s abilities in school, at home, at activities, or are causing your child unhappiness or anxiety, you may wish to consider OCD as a diagnosis. Many parents find that interrupting a ritual will cause extreme anxiety, to the point that the child will fight or rage to get back to the ritual. Some parents see panic attacks when rituals are interrupted or cannot be completely correctly. All of the OCD behaviors may often be considered “normal” but it is the severity and frequency that sets it apart. Obsessive Compulsive Tendencies are very common and normal in children. It becomes a disorder when it interferes with their life
Obsessions are: Intrusive (come into your mind without your wanting them), Irrational (concern things that make no sense or go beyond rational), Recurrent (keep replaying), Disturbing, and Anxiety Producing. I find sometimes that with young children, that because they do not always have “insight” that the thought or behavior is not normal, sometimes they are not Disturbed or Anxious, so long as they can perform their compulsion. Adults know the compulsion (behavior) is odd, and that causes them additional anxiety. Sometimes kids only become anxious if the ritual is interrupted.
At the end of this explanation, you will also find a printable check list of the tendencies listed.
Categories for Obsessions:
Contamination, Harm to Self or Others, Symmetry Urges (or “Just Right” OCD), Doubting, Numbers, Scrupulosity, Magical thinking, Hoarding, and Sexual Themes.
Categories for Compulsions:
Washing & Cleaning, Checking, Symmetry, Counting, Repeating/Redoing, Hoarding, and Praying. The tricky thing is that there are so many ways for the compulsion to manifest, and there is no logic to what compulsion gets attached to the obsession. Usually we see the compulsion in the child – and they may not be able to explain (or want to explain) the obsession behind that ritual. So I’ll just put things where they seem to go so that other parents can see our examples.
Certain obsessions do tend to link up with specific rituals a lot of the time. OCDChicago does a good job of illustrating this – they start like this:
Fear of contamination or germs… . leads to …..Washing/ cleaning
Fear of harm or danger.. . leads to ……Checking
Fear of losing something valuable. . leads to ……Hoarding
Fear of violating religious rules . . . . . leads to …..Preoccupation with religious observances
Need for symmetry. . leads to …..“Evening up” or arranging
Need for perfection. . leads to ……Seeking reassurance or doing things “just right”
So now for our parent list of OCD behaviors (if you strongly feel these are in the wrong category, let me know why & we can move them). Some of these may be repetitive, but hopefully the examples will help parents understand what OCD looks like in a child.
- Obsessive hand washing, due to fear of germs or stickiness or chemicals. Signs of this are often red chapped hands, children using the restroom more than is normal, long washing or bathing rituals, needing to wash in a specific order, extreme amounts of soap being used, huge amount of laundry being created (each towel touched only once, for example)
- obsessive need to pee
- obsessively sure that all pee or poop is not out, or that they are not clean – often leading to a compulsion of obsessive wiping.
- brushing teeth for a long period of time
- inability to eat certain foods previously liked.
- refusal to brush teeth, bathe, or change clothes
- fear of germ or chemicals
- worry of choking on food – asking for food to be cut into small pieces
- inability to touch certain things, such as food, clothing or toys that were previously loved.
- repeating sounds others make, especially a cough or a sneeze
- spitting germs
- Obsessive concern about throwing up
- avoidance of certain places or people or things previously enjoyed, such as restaurants, birthday parties
- inability to touch other children when playing age appropriate games.
- Inability to use public restrooms or bathrooms at school or friends homes. Accidents can be a sign (children may hold it rather than use a contaminated bathroom). * Inability to use certain bathrooms in the home. Inability to enter a bathroom without assistance.
- 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.
- 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
- “Is this fat on my leg?”
Harm to Self or Others:
- Worrying about one of their actions causing harm to another, such as “I cannot touch that black square on the floor or my sister will be in a car wreck” or “I need to hug my mom, or she will die”. This is also an example of magical thinking.
- Inability to separate from a parent or authority figure. Sometimes this is to the point that a parent will feel that their child is permanently attached – they cannot play alone, be in another room without panicking.
- extreme worry about weather or robbers – accompanied by repetitive rituals such as a repetitive thoughts (“if I pray to God in just the right way, robbers won’t come”), repetitive actions (“if I check the lock, the robbers can’t come”) or magical thought (“if I touch the light switch 3 times, robbers will not come”),
- 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
- Fears that I (mom) was going to die- would keep him up all night crying
- Fears that a monster was going to get him, if alone, in our bathrooms at home or a public restroom- would rather pee/poop in pants (at stores, friends house, school) than to say out loud that he had to go to the bathroom- or to go by himself ( I guess monsters would hear him if he said it out loud
- repeating certain words or mantra – this could really go anywhere – it is usually an example of magical thinking to ward of whatever the “bad” thing is that they think will happen. But it is often to ward off “harm” of some kind
Symmetry Urges (or “just right” OCD):
- 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
- retracing steps
- going in and back out of doorways
- turning light switches on and off
- counting toys
- insistence on a certain order of events (such as reading certain books in only a certain order)
- counting toys
- 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 seatbelts 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 (ex: am I sick, will I get sick, did I do that) This could fall in a lot of categories
- inability to make a previously simple decision for fear of consequences (sometimes logical, sometimes just a fear of it being a wrong decision). This could fall in a lot of categories
- checking doors to make sure they are locked (Doubting often causes “checking”
- constantly changing mind- fear of wrong decision
- Perfectionism – often seen in erasing work until the paper rips
- asking permission? My dd even now asks permission to close her eyes to go to sleep. She can’t fall asleep unless I tell her it’s OK to close her eyes and she asks permission to do things like go to the bathroom, things that she should be able to just run and do at home.
- You have to repeat back what the child says because they need to make sure you heard them (this could also be “just right”)
- Explaining…explaining, and explaining. “I didn’t mean it like that, what I meant was…and do you understand? Do you understand, no, no, no, you don’t understand MAMA!…I didn’t mean it like that, Papa do you see? I meant it like THAT…PAPA, I want you to understand, but Mama, did you hear me, I wanted to do it like that, not THAT–” All punctuated by the periodic scream–this may appear to be normal of course in young children, but to this constant extreme it is perseveration on ideas and/or actions..
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 – such as being unable to read anything with the number 7 on it (such as page 7, the 7th sentence, etc.
- 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) only swing on red swing (if someone was on it- he would have anxiety and once attacked the child)
- need to confess “bad things” such as unkind behavior to another child
- 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
- obsessive magical thinking such as “if I think it, it will happen… calling brother a furball then worrying that he will become a furball”
- unable to make a small letter “g” in school for fear that something bad will happen. U Made all small “g’s” in cursive, no matter how corrected.
- touching a green block in the carpet and then saying…”Great, now I have to marry a green person”
- Refusing to throw out odd things such as tissue, paper, empty juice boxes. A child may obsess over these for long times (weeks) if they are disposed of. They may go into the trash to get them back.
we did not have examples of these from our parents. These are rarely discussed outside of the home and therapist, but they are a common form of OCD. Children may have an obsession that they will look at another’s private parts, or think they have touched them. They many have compulsions such as confessing intrusive thoughts, avoiding looking at other people, staring at the floor, wearing hair over their eyes, or not speaking to others. This can be very difficult for a child to communicate.
Intrusive Thoughts of Violence to self or Others:
Technically this would fall into harm of self or others – but similarly to Sexual Themes, this is often not talked about. Children may become afraid that they will hurt another person. They may have vivid scenarios about how this could happen. They may ask questions, ask for reassurance, refuse to be in the room with a person, refuse to touch or be near a knife, etc. They may refuse to watch TV with anything frightening (past age appropriate times) for fear that seeing the event will make it happen (magical thinking). This was also not elaborated on by our parents.
Other areas related to OCD:
- “Will this make me gain weight?”
- Does this have sugar in it?”
- Is this fat on my leg?”
- “Will this make me weigh more than 50 lbs?”
- Trichotillomania (hair pulling)
On this forum, we find that children with PANDAS need to be treated medically first. Antibiotics, IVIG & PEX are discussed, and you will find great advice on these topics. Personally, we found that medical treatment was the most helpful piece of the puzzle.
For us, use of CBT (Cognitive Behavioral Therapy) and especially ERP (Exposure & Ritual Prevention) was a useful assistance during difficult times (although in an extreme sudden onset, children may not be in a position to learn these tools) – and has been a great tool as we dial down from an episode. Others have found these tools to be helpful as well. For parents that decide that their child does not have PANDAS, then ERP is the recommended therapy for treating “traditional OCD”. You can find great resources at OCD Foundation. If nothing else, doing ERP with the child will help them find some sense of power over the situation that they find themselves in. And that alone was worth it for our child. If you would like to read more about these tools, you can find a great workbook for kids on Amazon “What to do When Your Brain Gets Stuck – a kid’s guide to OCD”. My daughter was so delighted to discover that there was a book all about this challenge – and that she was not alone.
Original post of this can be found on ACN Latitudes.
Printable Check List
PANDAS Network has created a check list version of the above explanation of OCD in a young child. Hopefully this list will show that your child is not alone in some of the actions and thoughts and help you, as the parent, determine if what they are experiencing may fall under the umbrella of OCD. We created this in check list form so one may be able to see how many tendencies their child may actually have. Not all possible OCD tendencies are listed here. They are just samples.