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Megs_Mom

Signs of OCD in a young child

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Below is a post compiled from many parents experience on this site 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 wed list some here. We are not doctors or therapists, so these are just our parental thoughts. (Im sure this is repetitive, but want to get it up tonight. Ill try to edit it down a little & clean it up tomorrow night. When you reply, dont include this post, or this thread will be impossibly long!)

 

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 childs 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 childs 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.

 

Categories for Obsessions are: Contamination, Harm to Self or Others, Symmetry Urges (or "Just Right" OCD), Doubting, Numbers, Scrupulosity, Magical thinking, Hoarding, and Sexual Themes.

 

Categories for Compulsions are: 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. www.OCDChicago.org 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.

 

Contamination:

* 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 wont come), repetitive actions (if I check the lock, the robbers cant 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

Doubting

* 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.

* apologizing

* 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)

Scrupulosity

* 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,

 

Magical Thinking

* 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 gs 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"

Hoarding

* 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.

 

Sexual Themes: 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 anothers 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:

Anorexia

o "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)

 

Treatment: 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 a great Q&A, go to

http://www.latitudes.org/forums/index.php?showtopic=6142. And for a comprehensive fact sheet, go to : http://www.latitudes.org/forums/index.php?showtopic=6128

 

 

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 www.ocdfoundation.org. 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 kids 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.

Edited by Meg's Mom

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Our biggest issue was the "scripting" aspect of OCD - the intense desire to have others do and say things exactly in a certain way and raging if that didn't happen.

Tamar Chamsky's books had some really good insights. We used a CBT technique that led us to name each emotion - Mr. Bossy, The Worry Guy, Edgar the Angry... Then when we saw a behavior we didn't like, we'd chastise the emotion guy, not our son. So we'd say "Edgar, leave my son alone. He does not want to feel this way and act this way. Stop tricking him and making him feel so horrible." This let our son know that we weren't angry at HIM, just at the disease and the behavior. In the middle of an exacerbation, they have so little control over what's happening to them. Having names to yell at de-personalized things and taught a young child (6) how to manage his feelings. More than once, in the middle of a rage, our yelling at Edgar defused the situation and ended the rage much quicker than simply trying to "reason" with my son. In a rage, they are beyond reason. But they somehow can still relate to the more concrete concept of thinking of emotions as little people inside themselves.

 

This also helped for bedtime anxieties. After coming into our bedroom numerous times because he was scared, we'd remind him that it was just the Worry Guy tricking him, trying to get attention. My son would beg us to sleep with him. Sometimes we did. But if we felt he could handle it, we'd tell him no and explain that our going into his room only made the Worry Guy afraid of the parents and it taught the Worry Guy that our son didn't have to be listened to. That the only way the Worry Guy would ever respect our son as the boss was for my son to do the bossing back on his own. Otherwise, he'd always be the victim and not the boss. Since "control" was so important to him in other respects, he slowly - very slowly - got better at this.

 

Over time, my son learned that we understood he couldn't help it when the bad guys showed up, but he was ultimately to only one who could boss them back and he was ultimately still responsible for the bad guys' behaviors. So he wasn't excused from behaving well. There were still consequences when he didn't try to control his rages. But he at least knew we didn't think that HE was a bad person. It did give him a sense of control during very scary times.

 

This was all in conjunction with antibiotics and other medical treatments. But as a coping tool during bad times, it helped us all feel like we had some tools.

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I'm wondering, too, if we should -- by word of mouth -- encourage others in our childrens' daily sphere to make gentle mention of behaviors we might not recognize as "odd" because we've been raising them since birth.

 

My son was 6 before a prototypical OCD behavior -- excessive hand-washing -- surfaced. But when I look back at his medical records and earlier "hyper-sensitive" behaviors, I feel convinced that his PANDAS onset was at about age 2.5.

 

When he was finally mis-diagnosed at 6 with OCD, I called his former preschool teacher when he was 2-3; she remains a friend to this day and had taken special interest and care with my son when he was in her classroom. I gave her the news with the lead in, "You're never going to believe this, but L was just diagnosed with OCD." She was silent for a moment, and then she said that, honestly, she wasn't horribly surprised. Then she noted again for me how L always had to have his cubby ordered in a certain way, how he was reluctant to touch some things in the classroom, etc. I asked her why she'd never made a bigger point of these as being "atypical" behaviors and she said because she's not a doctor or a psychiatrist and didn't see any cause for alarm . . . she just knew through her 10+ years of experience with 2-3 year olds, his behavior was "different."

 

I know a lot of us bristle when others mention things about our children sometimes; I certainly have in the past. But I really wish that teacher/friend had encouraged me to look into my son's behaviors back then. We might not have arrived at this most recent very tough period. Not that I'm blaming her or any of the other teachers, babysitters, friends' parents, grandparents who kept their thoughts to themselves; I'm sure it's hard to know when it's the right time to bring something like this up, if ever. But we are parents of just one, with no children before or after via which to measure the true reasonableness of his behavior, so we were really in a tough spot, I think.

 

What about you? If one of the children in your playgroup, or that you chaperoned on a school field trip, displayed behaviors that set off alarm bells in your head, even if you don't know the parent(s) well, would you say anything? Or is this stepping out of bounds?

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MomWithOCDSon- I totally understand where you are coming from. You WANT to know and you want people to give you information. But there are so many parents that do not want this and if you are not ready to deal with it... it will not help. My opinion, at least. I am constantly reminded by the teachers and director at my kids school how much more involved and curious I am than most parents (obviously not like parents on this board). So many people drop their kids off and pick them back up without even asking a single question. Now I want any piece if information they can give me. And sometimes I still wish I had more! I would love surveillance cameras! :lol:

 

On the other side though... it is also hard when people are telling you things about your child that just don't fit. Most recently, one of my son's teachers mentioned possible Aspergers when he moved into her class (probably because he does have OCD???). We have been through numerous evaluations and have NO diagnosis. Not even pdd-nos. So when she said that, I kind of took it wrong. I know I should not because I would definiotely want to get help if there was that issue... but it is still sometimes hard to take.

 

So... my only point is this long post was... you have to tread very lightly with people about their children. The parents on this board WANT to know but that is because we are ready to get answers.

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My daughter had a few of her 9 year old friends sleepover a year ago and one of the girls drank immense ammount of water. She came from a very poor family and the parents didn't speak english. I found out this girl also drank a lot of water at school. I thought it could be that the water where she lived didn't taste very good or that she might possible have another health condition like juvenile diabetes. I shared my oberservations with the school nurse and her teacher and was given the "We aren't medical professionals, it's not our place to suggest that something may be wrong" speech.

 

I find that even when I want a teacher to share obeservations about strange or outside the norm behaviors they are usually reluctant to do so. I guess it's because so many parents don't want to hear it. We here on this forum have acknowledged something isn't right and want solutions.

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Bumping up since this is such great info. I was reading it tonight to verify my dd's hoarding and new symptom, fear of choking.

 

Susan

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Would pacing/walking around a certain "track" in frequently visited areas be part of the "just right" OCD? I've seen a lot of people discuss their children doing this on the board. It's my biggest compulsion, too.

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Thought I'd bump this up - lots of parents discuss "anxiety" but are not always sure about the signs of OCD, such as compulsive reassurance seeking. Early in our search for treatment, our daughter was diagnosed with GAD (generalized anxiety disorder) which she does not actually have. A lot of docs confuse GAD and OCD, so this list may help you educate your doctor about "sudden onset OCD".

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Hi all - lots of conversation lately about what OCD looks like in a young child, so thought I'd bump this up. Also, saw a great OCD trait listed from another parent & am adding it above - "needing games to be played perfectly, played by different rules, or being unable to lose". I think this belongs under just right OCD, although it could fall in a few places.

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My daughter had a few of her 9 year old friends sleepover a year ago and one of the girls drank immense ammount of water. She came from a very poor family and the parents didn't speak english. I found out this girl also drank a lot of water at school. I thought it could be that the water where she lived didn't taste very good or that she might possible have another health condition like juvenile diabetes. I shared my oberservations with the school nurse and her teacher and was given the "We aren't medical professionals, it's not our place to suggest that something may be wrong" speech.

 

I find that even when I want a teacher to share obeservations about strange or outside the norm behaviors they are usually reluctant to do so. I guess it's because so many parents don't want to hear it. We here on this forum have acknowledged something isn't right and want solutions.

 

yikes, a school nurse doesn't consider herself to be a medical professional?

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