Hello everyone. I don't usually like giving advice, but I felt the need so strongly here. I have a 9 year old son diagnosed with severe OCD at the age of 8, after years of symptoms coming and going. The biggest mistake I ever made was thinking that when his symptoms would dissapear, it must have meant that he did not have OCD.

I was familiar with OCD as it runs in the family, and we all seem to have our quirks about us, but I did not know that it was typical for symptoms to go away, change, etc., especially in children. This belief kept my son from getting the diagnosis and help he needed sooner. Children present differently than adults. I now understand that OCD WILL come and go, and the themes or types of intrusive thoughts, and even the obsessions, rituals, and compulsions will change all the time.

First, recognize that a diagnosis should be made by a child psychiatrist, and if a diagnosis has been made by a paediatrician, that is fine, but request a back up diagnosis from a child psychiatrist who specializes in paediatric anxiety disorders. Where I live, this can be accomplished through tele-psychiatry as we are 4 hours from Toronto Sick Kids Hospital. There are paediatricians out there who have extensive studies and knowledge on this if you cannot find or acces a child psychiatrist. Just ask questions about the doctor's background in this area. Even many therapists are unfamiliar with childhood OCD and how it presents.

After reading your post, I recognized immediately that the therapist who saw your daughter and was freaked about the tree incident was focussing on the wrong thing. It is not about whether the child jumped from a tree, or the fear that your daughter may want to hurt herself (the therapist should have probed further). The important factor is the comments your daughter made about jumping from the tree....the "I think I did it on purpose" part is more of a concern than the actual activity. This is so hard to explain. The therapist may have been right on about a diagnosis of OCD, but clearly is not understanding the child's thought patterns. If it helps, I can give you examples of some of the thought patterns my son went through (goes through) so that we can get a general understanding of "the root of the matter" and what is in fact important in understaning this as opposed to what you will need to learn to discard so to speak . Here's a list of all the ones I can think of in the last year under different categories:

Exactness/symmetry:
1) Wanted his bedroom emptied of all furniture
2) Began bagging and putting away all of his favorite posters and pics from his bedroom walls.
3) Found him trying to drag a solid wooden set of bunk beds through bedroom door way into hall.
4) Stopped sleeping under blankets (would rather freeze than wrinkle his bed).
5) Threw personal belonings and toys in garbage.
6) Repeatedely removed drawers from dressors to unfold and re-fold clothing.
7) All remaining items in bedroom pushed up against one wall.
8) Complains about chips in paint (walls), scratches on floor
9) Teacher seeks him out as special helper - moves her shelves in class, straightens boots in hallways, washes chalkboards. (School personelle are notorious for having little to no understandig of childrens mental health symptoms you will need to become your child's school advocate)
10) Erases other childrens drawings from chalkboard in day care (mis-understood by other children and workers as "bad" behavior).
11) Looks at reflection in mirror more than other children of same age.
12) Puts entire container of hair gel in hair every morning before school to make it "perfectly disastorous".
13) Starting things over if something goes wrong. This can be everything from starting to read an entire book over and over again if someone interupts him, starting school work over again if he makes a mistake, rebuilding lego structures if something falls, etc.

So in this list it should be obvious that the root of the matter is the need for exactness / symmetry or perfection and a feeling that things are "just right". If a therapist was more concerned about the rash on my son's hands from over washing, than his need for over washing, the whole point would be missed, and I would walk away with a jar of cream. I could go on for hours, but hopefully you get the picture. Things just "feel" out of place, not right, not perfect and he has been to both ends of the spectrum. E.G., His room has to be perfectly clean, other times it has to be perfectly disastorous to feel right - kind of like his hair style. So important to realize that not all people with OCD will appear to do things perfectly by our standards. The most outrageous and messy things can feel perfect to them.

Next List: Intrusive Thoughts
1)Suddenly could not answer yes or no questions. Every question was answered with "I think" or "maybe". After probing him about this, I realized that he was afraid to answer incorrectly, and if he did, would then consider himself to be lying.
2)Began to tell on himself numerous times per day (confessions).
3)Began to summon me to his bedroom for daily confessions. OCD kids will often pick one person in the family that they share their thoughts and worries with. They will even scream and tantrum if another family member tries to become part of the conversation. Visits to the confession room (I mean his bedroom) can last for hours on end.
4) Often states "I'm bad" if he makes a mistake, or "it's my fault" or "I think I did this on purpose".
5) Was terrified one night that the world was tricking him and that we were speaking in different languages to each other, but it just seemed to make sense to him, and that he might not know what "I am really saying".
6) Intrusive thoughts about vaginas. That one was scary but is a good example of when you need to discard the information. Because a young girl had shown him her vagina when they were toddlers, and he was now seeing a vagina in his mind every time her heard the word "girl", he felt very bad and guilty inside, though we have never made a big deal out of stuff like that. This theme soon expanded to include an aversion to anything that had a straight line in it. Sounds ridiculous I know, but he could not even look at a staple for a while because everything with a straight line in it, reminded him of a vagina.

I was terrified over these last two things. I learned however that some of the things they say will frighten you: "What if I hurt someone?" "What if I kill someone?" "My brain keeps saying I wish my parents were dead".

With OCD, you have to understand that the content of the obsession is not usually important. Strange associations will be made (vaginas = staples). Again, the root of the matter in all of the above is that he believes he is guilty and innately "bad" - that is the common denominator in every intruive thought. The fact that these intrusive thoughts cause a child discomfort tells you that they do not want the thoughts, that they are afraid of the thoughts and the content in them. There is no need to worry over perversion, or the child hurting someone, unless you see compulsions in which the child is doing just that. What a lot of people don't understand is that these intrusive thoughts contain the obsession AND the compulsion. The obsession comes in, and the act of repeating the thought and seeing the thought through (playing it out in their mind), and confessing IS the compulsion itself. The difficulty with this is that as a parent you should always be there to listen to your child's worries and talk them through it, but the act of these "talks" becomes a ritual and a compulsion in itself. It snowballs. Also; the act of giving yourself to the child for confessions causes the child to start telling you everything in their heads, and I mean EVERYTHING. You have to draw a line at some point and figure out what your child should be discussing. Although you never want to say "don't tell on yourself" to your child, you do want to end each confession with "that's normal, you don't have to tell me that unless someone is hurt......" etc. Try to relate some of the child's concerns about their own thought patterns to funny stories about the thoughts you used to think as a child. Re-assure the child that the thoughts will go away, but are currently being reinforced because we are "paying them attention"......intrusive thoughts thrive on that attention.

I know you are and were concerned about your daughter being in the room when talking to the therapist, but I must tell you that your child's ability to cope with OCD will depend on HER understanding OCD. Knowledge is power for these kids. They need to know what it is that is going on, otherwise they can't be a part of battling back, and the person with the OCD has to be involved in that process. There are ways of explaining it to her that will seem less frightening. My son describes his OCD as "the bully in his brain" or "the brain hiccup" and once he understood how the bully in his brain was causing him to repeatedely do things and think unwanted thoughts, he was also able to do what we now call "BOSS BACK OCD". Think of it another way.....if I didn't tell my son that this was OCD (a seperate entitiy from who he is), he would believe as your daughter may be doing right now, that he was responsable for all of the bad thoughts. You can't let this disorder be "her". It has to be made seperate. So my son understands that he is a boy who happens to have OCD, and not the guilty, innately bad person that he was believing himself to be. This is so important.

***I'm not going to tell you that it simply doesn't matter if a child talks about hurting someone or themselves, because there are other mentall health issues that could lead a child to violent behaviors, so please understand that I am just speaking from my own experiences as it relates to my child with OCD***.

Does she have any favorite numbers? Favorite numbers are often "Lucky Numbers" for the OCD child. OCD children can have this good luck / bad luck perspective. My son came in from outside one day after playing basketball. The power had gone out in the neighbourhood that day. He immediately stated that the power must have went off because he lost at basketball. Strange associations are made. OCD kids can sound crazy at times. Their thoughts can really scare you. Again, these are weird associations.

Does your daughter tap her finger(s) a special number of time on things she touches, or touch things in a certain way? Sometimes there is alot of counting going on in their heads that you don't know about. My son had some very strange hand movements. With my son, he would have to turn his body around to the right if he had turned left, would have to move his fingers and hands in some way (both hands at the same time in sync with one another). This is some kind of "need for evening out" with "right and left".
Chronic clearing of the throat, chonic sniffling of the nose, making repeated noises - all part of his OCD. Does your daughter react negatively to changes in her routine. You may not even notice that she has a routine. My son will typically do things in the same order after waking up each morning. You won't notice that they have a routine until you attempt purposely to break it. Ask them to do you a little favor at some point during the initial moments after she gets out of bed. Watch for a meltdown. Children with rigid routines will freak out if their usual line up of events is interupted or broken with even the smallest of requests or changes.

My son also could not hold anyone's hand. Most people would assume the child was afraid of touching germs and some of them are, however in your daughter's case as in my son's - they are more afraid of "giving / spreading" germs that touching them. OCD kids are often afraid that they will cause other people harm. It sounds like your daugter has this theme if she is afraid of putting her spit on you. The germ things is hard to deal with as it can go both ways. My son is afraid of touching germs and spreading them. Those lysol commercials showing colorful germs all over everything in the house are not very helpful to these children. There are books for children out there about good germs and bad germs that could help, but I found that a simple explanation about what good germs do usually helps.

As for the medication that may be offered to your child, you will have to decide at some point if her quality of life is poor. My son's OCD meant that he could not be a child. He was absolutely ruled by this disorder. Prozac is the choice for children because it has been studied and shown effective in children. Not all of the anti-depressants have been studied in children and this is why prozac and zoloft are often the first ones to be offered. My son responded amazingly to 20mg / day for about 3 months, and then started back sliding. The dose was increased to 30mg / day a couple of weeks ago and he is still back sliding. It's a long road. The good news is that children who are treated for OCD as children are more likely to show no signs of the disorder as adults, where as people who have the onset of OCD at puberty or older are more likely not to outgrow it. The best course of action proven so far is a combination of cognitive behavioral therapy and medication.

OCD and anxiety disorders do run in families. The predisposition for OCD may have been present in your daughter, and then the death of your mother may have been the environmental stress or trigger that brought it on.