Tell me your tales of Obsessive Compulsive Disorder (OCD), pleeeeeease!

Discussion in 'General Parenting Archives' started by Macsmom, Feb 20, 2004.

  1. Macsmom

    Macsmom New Member

    I'm looking for stories of Obsessive Compulsive Disorder (OCD) in other people's kids (and the parents who also have it), so I can compare my child. When I am confronted with a new problem, I am consumed with finding information about it, then I can let go of useless worry and deal with it. That's what I'm doing here.

    I'm wondering at what age you noticed symptoms, what were they, did it seem to get worse all at once (as my difficult child's seems to be doing), and scariest of all, did they have any auditory hallucinations with it? Were there things that you later realized that were Obsessive Compulsive Disorder (OCD) symptoms, but didn't recognize at the time and just wrote it off as a personality quirk or being difficult?

    What medicine and what kind of behavior therapy worked for you?
  2. Ephchap

    Ephchap Active Member

    In hindsight, my son was always a handwasher - even as a toddler.

    We really didn't notice anything until age 13, as puberty was setting in.

    He started touching the air vents in the car on the front dash - first one, then the other. If you bumped his arm, you would have to bump the other arm. He started getting in trouble at school for looking out the window - first once, then had to do it again, even when told not to.

    We eventually found out - everything had to be even. Counting things in his head, first one hand then the other, etc.

    One night, I went to kiss him goodnight in bed. He was obviously out of breath. Found out he was holding his breath while saying his prayers to himself, or he was afraid something bad would happen.

    He used to drink out of a can of soda, holding it with only special fingers on each hand, and taking one sip without nose touching the can, then again with nose touching.

    Weird stuff. Unexplainable stuff - but in his mind, if he didn't do it that way, something bad would happen.

    He went to therapy at first 3x a week, then twice, then once, and eventually once per month. They had sessions where he practiced breathing techniques while saying prayers to himself. He had to drink from the soda can with right hand in his pocket.

    The therapist was trying to get him to consciously force himself to touch things only once.

    They talked through how nothing bad would happen.

    They first took him off ritalin, which he was on for the ADHD since about age 7.

    He was then put on prozac - first 20 mg, and increased every week till up to 80 mg - the recommended dosage for Obsessive Compulsive Disorder (OCD).

    Each time they tried to re-introduce just 5 or 10 mg of ritalin, the Obsessive Compulsive Disorder (OCD) mannerisms returned.

    They instead went to Wellbutrin, and he's been on the same combo of medications for a long time now - 80 mg of prozac, 150 mg of wellbutrin.

    Hope this helps.
  3. Fran

    Fran Former Site Owner

    I'm curious about obsession also. I did a thread on rituals,Macsmom(which is probably at the very,very end of General forum)

    Rituals are different than obsessions but the thread crossed over several times.

    My difficult child has so much chaos he is almost the polar opposite of the rigid thinking of obsession.

    I'm just really curious about it myself.

    Hope someone can help you out.
  4. kris

    kris New Member

    i've never heard of auditory hallucinations being any part of Obsessive Compulsive Disorder (OCD). i believe people have already suggested you get him in to see psychiatrist about this issue. i believe it's probably separate from any Obsessive Compulsive Disorder (OCD) behaviors.

    paxil seems to be the AD of choice for treating. from what i've read medications are the first line of defense. not sure how much success people have with-talk therapy for treatment....esp a young child like yours.

    kris /importthreads/images/graemlins/smile.gif
  5. kris

    kris New Member

    not saying talk therapy isn't worth a shot. you never can tell what's going *do it* for our kids. some respond very well...others not so much.

    kris /importthreads/images/graemlins/smile.gif
  6. Ephchap

    Ephchap Active Member

    I believe both the therapy and medications were what helped my son. The medications helped curb the obsessions, but the therapy helped him learn the triggers and to cope with them.

    I have also never heard of auditory hallucinations being an off-shoot of Obsessive Compulsive Disorder (OCD). I would definitely check with a psychiatrist for a full examination and evaluation.

    Good luck.
  7. Macsmom

    Macsmom New Member

    I've let my pediatrician know about the voices continuing, and she said that it can be a sign of the Obsessive Compulsive Disorder (OCD), just not very common. If they continue after we get to a therapuetic dose of prozac, she said then we need to look into it further.

    I believe the talk therapy would benefit my child, because he's just so verbal. He has always responded well to explaining things, WHEN he's willing to listen. :rolleyes: He is able to understand ANYTHING that I am able to explain, and that he is willing to sit through. He is so very mature in many ways, I'm always amazed at how immature his friends seem in comparison.

    80 mgs is the recommended dose for Obsessive Compulsive Disorder (OCD)?!!!!! :eek: Is that for an adult? difficult child only weighs 65 lbs. We're moving up to 10 mgs tonight.
  8. kris

    kris New Member

    i think it takes higher doses of an AD to treat the Obsessive Compulsive Disorder (OCD) than depression. just as it takes higher doses of an AD to treat anxiety.

    medications are complicated. dosage is not based on size nor age, but rather symptomology.

    kris /importthreads/images/graemlins/smile.gif
  9. Ephchap

    Ephchap Active Member

    LOL, yes - don't freak out. I know 80 mgs sounds like a lot. I thought so too, but when I found sites listing prozac for Obsessive Compulsive Disorder (OCD), it did say something about successful treatment with 80 mgs. Of course, that's not to say that's the dosage your psychiatrist will get to with your son.

    I believe my son was about 5'4, 130 pounds or so when he was 13 and first diagnosed. He's now 6'1 and about 200 pounds, and the dosage hasn't changed.

  10. busywend

    busywend Well-Known Member Staff Member

    My difficult child was recently diagnosis'd with Obsessive Compulsive Disorder (OCD). It was something I never considered before. The questions asked by the nueropsych brought out answers that I never would have expected.

    She is not the clean, hand washing Obsessive Compulsive Disorder (OCD) type. I think she is more comfortable in chaos, if I clean her room she is very upset by that.

    She has obsessive thoughts about me when we are apart. She worries unnecessarily. She is one to lock the doors and check them twice. She said she has to even things out when she touches them. Even if she has to go back 10 minutes later, she thinks about it the whole time until it is even.

    She has damaged things around the house, not when angry, but just because she has to do it. I consider that the compulsive part of her. She has cut the lamp shades, sliced the countertop, put little cut marks in every wooden piece of furniture that I own. She has burned a key on the keyboard and a cupboard is blackened from her burning it. None of this is done during anger times.

    I hope to learn more about her Obsessive Compulsive Disorder (OCD) when we go back in March. I am sure there are sides to it I have not even considered to be part of it yet.
  11. BonnieJean

    BonnieJean Active Member

    I guess my sons OCDs are like busywend child. He started off around age 5 or so. He had this thing of touching hot things like the burner on the stove, my curling iron, iron, fire, anything that would burn. I still don't know why, but I guess that's a normal thing for kids with Obsessive Compulsive Disorder (OCD). He also has to even things up. He and his 7 year old sister do this. We have eating trays for them and if the scene is upside down, they have to take everything off it and turn it around right side up. Some of his OCDs are closely reltated to his Tourettes so it's kind of hard to tell the difference sometimes. Like the smelling obsession. I know this is also a tic due to Tourettes, but it can also be an obsession.

    He also has the locking of doors, either in the car or house. It drives me nuts sometimes because Zach and his older brother do it. Every single time they get out of the car they have to lock it. Even if they are just running back into the house for a forgotten item. I dunno why though.

    He also has this huge obsession in the summer about going for walks down on the sandbar at the river, that we live way too close to. If we are driving down the highway coming home from shopping, there's a place where he can see if the sandbars are down. If they are, then he will have this thought of walking down there and as soon as we get out of the car, no matter what we have to do, he wants to go there. He isn't allowed alone so he has to wait. It's like the same thing over and over and over again.

    Macsmom, I would love to know ALSO, how you and other parents deal with these obsessions. My son will not let go of his thoughts. I mean, say one of his sisters gets sick and can't go anywhere, he thinks he has to stay home to take care of them or something bad will happen. I just went through this with my 7 year old being sick out of school for a week. What an ordeal sending him to school every day was. OMG...

    Hope that was what you meant....

  12. Tisa

    Tisa New Member

    I have had Obsessive Compulsive Disorder (OCD) as long as I can remember (along with anxiety and depression). When my mom died, I pulled all of the photos of me from the family photo album and I am not smiling in any of them. Seriously, not one showed me smiling.

    As far as Obsessive Compulsive Disorder (OCD) symptoms, I:

    !) counted things in my head as I went along (telephone poles, birds in flock formation, # of cans I saw along the road, etc)
    2) when I learned to drive, I kept thinking I had run someone over and would have to double back to make sure I didn't run someone over
    3) have to walk up the steps in a certain way, including skipping a step if that's what I felt "compelled" to do
    4) washed my hands frequently and also picked at my ezcema, making it worse
    5) I had very black and white thinking, I was always asking questions of teachers/adults to make sure I got everything "right"
    6) Very modest as a youngster, afraid someone would walk in the bathroom
    7) if I touched something with one hand, I'd have to touch it with the other hand so everything felt "EVEN". That's still an issue with me.
    8) If I said or did something I couldn't make amends for, I felt compelled to pray certain prayers in certain orders in either an even or odd # of times (I was raised Catholic)
    9) if I clip one finger nail, I have to clip all of them or I don't feel right
    10) can't stand clutter, I am always straightening things up
    11) My husband and difficult child have left the fridge/freezer open several times, so I am constantly checking to make sure the doors are sealed (I swear, I have to do it everytime I walk past them).
    12) Since difficult child has purposely turned the gas on on our stove's burners (has electronic ignition, so you can turn the handle part way and it won't light) I have to check them to make sure they are completely off
    13) I have to go through my morning routine in the same order every day or I feel like the "sky is going to fall"
    14) obsessed over "germs" at different periods of my life

    This list is too long to list!

    Until I got into 1st grade, I thought everyone was like me.

    Paxil has helped. I've seen counselors before, but never delved into the Obsessive Compulsive Disorder (OCD) since my depression was the worst problem.

    If they had an operation to cure this, I'd risk it to be rid of this part of my personality.
  13. Macsmom

    Macsmom New Member


    How did they differentiate between the Obsessive Compulsive Disorder (OCD) and Tourettes? I believe he has a touch of that, too.

    Just last night, difficult child wanted to touch the pot that I was cooking with. I said "go ahead, but it's so hot that I'm not gonna do it". He touched it and agreed that it was REALLY hot, LOL, but it didn't leave a blister.

    You know, he has told me often that he has weird thoughts of jumping off things, like cliffs, if he is near them. He consistently reassures me that he never would, but that those weird thoughts come into his head from somewhere. He commented on how weird that is for him to have those thoughts because he is such a careful child. He said the jumping would be fun, but not the landing. :rolleyes: Has the same comments about bike wrecks and car wrecks. It's not suicidal thoughts (we've had THAT discussion), so I suppose that could be obsessive thoughts. Must confess, I didn't think too much of it because I worry about things like overpasses falling on the car every time I go under one.
  14. musicmom

    musicmom New Member

    My son (age 13) has PANDAS, which is not true Obsessive Compulsive Disorder (OCD), but can cause Obsessive Compulsive Disorder (OCD)-like behaviours. Now that he is in puberty, I am wondering if some of the Obsessive Compulsive Disorder (OCD) might not be permanent.

    For instance, he seems to be unusually concerned about scrapes and cuts. This was not helped at all by the fact that husband just spent 4 days in the hospital with cellulitis, which is an infection that develops from a scratch. When my son has a cut or scratch, he can't fall asleep unless I put antibiotic ointment on and promise that I'll check on him 3 times in the night. I always just say: "You'll be find, Steve." and I DON'T check on him.

    Last night, I took him and my daughter into the city to see "Aida" on Broadway. At least a dozen times during the show, he nudged me to ask about a small scratch he thought he'd gotten from the dog. Could it turn into cellulitis? No, I said, dad got it from a cat, dogs don't spread it (Believe me, I asked at the hospital. I would love to have an excuse to get rid of the dogs). Could it be rabies? No, sweetie. How do you know, mom? Well, the dogs have both had their shots. What date did Oreo have hers? About a year ago? How long do they last? 3 years. Are you sure, Mom? I could have rabies! No, dear, you drank 5 glasses of water at dinner, what's the Greek name for rabies? and on and on.... I am monitoring this closely because I am seeing a possible Obsessive Compulsive Disorder (OCD) and/or anxiety disorder here. My husband has anxiety so bad that it's torture to even get him into Manhattan, let alone on an airplane. My own sister has been agoraphobic for years.

    Tisa - I don't know that I would count checking the fridge and the stove as Obsessive Compulsive Disorder (OCD). I do those things too and I am definitely not Obsessive Compulsive Disorder (OCD).

    As for tx, my friend's son did very well on Luvox.
  15. OTE

    OTE Active Member

    I know that symptoms of Obsessive Compulsive Disorder (OCD) are also on the list of symptoms of Tourette's. But mild symptoms are also common to BiPolar (BP) kids too. If you're looking for the technical definitions of the specific illness go to the links page. Best I can compare it to is a cough... is the cough due to cold, flu, pnuemonia, broncitis, lung cancer,....? You need a professional to look at the "global" picture. Obsessions are only one symptom. The thoughts about jumping off of something... again, need a professional but I haven't heard of anything like that labeled an obsession. Maybe suicidal idealization? Not the same as suicidal thoughts or plans! Maybe something in the risk taking thought area?

    I agree that I haven't heard of auditory hallucinations in the Obsessive Compulsive Disorder (OCD) area.

    My difficult child's Obsessive Compulsive Disorder (OCD)- like symptoms (NOT full blown Obsessive Compulsive Disorder (OCD) but something generally related to everything else he's got as symptoms- and we still don't have a diagnosis!) tight clothes, no tags in clothes, no dirt, no insects, no rodents, no small wildlife of any kind (he's afraid of possums at night???), no rough textures, no food touching on plate, no dairy products or anything resembling dairy products, no smooth foods except ice cream, nothing vaguely resembling a shadow stain on his clothes, hmmmm... blanking now but I'm sure there are more.
  16. busywend

    busywend Well-Known Member Staff Member

    Tourette's is a compulsion I guess. There must be both a physical and a vocal tic in order for it to be Tourette's Syndrome. I always thought the rapid blinking my difficult child did was not able to be stopped. She can not help it. The Obsessive Compulsive Disorder (OCD) however, she can try to stop, but the urge to obsess or count or touch is so great that eventually she has to. But, she can control it for a bit. Where as the tics she can not control.

    I guess the complexity of the child is more important to know than the actual diagnosis. I think the more we know about the behaviors, the more understanding and forgiving we can be. The ODD is the hardest part to me. The disrespect and defiance of rules is just beyond what I ever imagined.
    But, knowing that she did not cut (or rather rip) all the tags out of her clothes just to annoy me is good. Knowing it was truly making her life harder - now I say go ahead and rip (preferably cut) away.

    Getting to the point of difficult child understanding herself and her differences - a challenge not many discuss. Not sure if it is even possible or a goal. I think it would help though.
  17. Nibor

    Nibor New Member

    I have been diagnosed with Obsessive Compulsive Disorder (OCD). I have been given Paxil and it has helped to soften it.

    I would have thoughts of really crazy unrealistic bad things that I was positive would occur...would replay it over and over and over in my head. Still have trouble sleeping with this...

    I have to check doors at least 3 times and feel the lock - turn the knob. I must feel it!

    I am very insane about positioning of items in the house or the way the silverwear is put away, the way things are folded... It MUST be perfect and my way or I get crazy angry and yell.

    I am an extreme perfectionist about my work and go wacky if someone finds an error with it.

    I used to think that these things were more anxiety related but, the doctor. says it is Obsessive Compulsive Disorder (OCD)???

  18. Tisa

    Tisa New Member

    checking is definitely on the list of Obsessive Compulsive Disorder (OCD) symptoms.

    I've compared notes with other Obsessive Compulsive Disorder (OCD)'rs and done research and one of the most common behaviors of Obsessive Compulsive Disorder (OCD)'rs is checking.

    My niece has Obsessive Compulsive Disorder (OCD) and she has to check the windows, fridge, freezer and oven doors to be sure they are shut tight. She said she even does this when she gets up at night to use the bathroom. She detours through the kitchen and checks everything, otherwise she can't go back to sleep.
  19. Nat

    Nat New Member

    My difficult child was 6 when diagnosed with Obsessive Compulsive Disorder (OCD). He was terrified of many things: All dogs, pools and lakes etc. He would obsessingly catch bugs and small creatures nearby but not go in the water. We had a beautiful in-ground pool at the time and even when we had huge pool parties with cousins his age he would not go in the water.

    He was (and still is) extremely ridgid in thinking.

    Our middle son(a toddler at the time when the Obsessive Compulsive Disorder (OCD) was the worst) was eating cheerios etc. in his high-chair and if any food dropped on the floor difficult child would freak out about "wasting" food. He would rage for long periods of time about the wasting that would occur and said we were wasting food on the baby. We have NEVER not had enough food.

    He will not throw anything away and will go through the garbage looking for his things if he thinks I have thrown something away. It is not so good that I am a "Neat Freak"!!

    He very easily gets "stuck" on a certain idea and you have to act on it right away. An example is he wanted to buy some fish for his tank and had to have them right then. The fish store had closed so he wanted us to try another spot etc. etc. He will rant and rave until you give in.

    He tried Paxil 6 years ago and it literally made him dance on the tables.....He has been on Luvox since then and that made a huge improvement for many years. We have moved abit in the last few years and all the Dr. who see he is on Luvox are suprised as I guess it is not that commonly used.

    Lately he is pretty obsessive again so I called a new psychiatrist today and we can't get in until the end of April!! We are now living in an area where mental health professionals FOR Children are desperately needed!!

    Hope that helps!

  20. vickid

    vickid New Member

    When my daughter was a baby, I made jokes about how obsessive she was. I was joking, but in retrospect I realize that she has had Obsessive Compulsive Disorder (OCD) since she was an infant--probably since she was born. By the time she was 3, I was no longer joking about it. It was obvious there was something terribly wrong. Her biggest obsessions then were grooming-related. When bathing, she had to wash each body part a certain number of times and had to start over if interrupted. She washed her hands a hundred times a day and had to count while doing it; ditto with combing her hair, brushing her teeth, etc. Saying goodby to me at preschool and going to bed at night both involved hours-long elaborate rituals that had to be performed exactly right; if not, the rituals had to be started over again and again and again until she felt they were performed "right." She had lots of issues with her clothes--tags were unbearable, she couldn't wear certain materials, she couldn't wear shoes and socks. She put her clothes on, took them off, and put them on again over and over in a futile attempt to make them feel "right."

    It took me a year to get a diagnosis and treatment, but at age 4 she started taking Paxil and it was a miracle drug. Her Obsessive Compulsive Disorder (OCD) was brought immediately and completely under control. I had investigated cognitive behavior therapy (which has been found to be effective with Obsessive Compulsive Disorder (OCD)), but the doctor and I both agreed that at age 4 she did not have the cognitive maturity to benefit from it, and it seemed unnecessary because the medication worked so well. Because your son is very verbal and mature, cognitive behavior therapy might work well for him. I'm thinking about it again now that my daughter is older.

    Unfortunately, as the years went by (3 years since she started Paxil), her mood became very unstable and she recently suffered some really terrible episodes of mania, so we had to discontinue the Paxil. I've mentioned before that she is now taking Abilify, which has stabilized her mood, and recently started Prozac for the Obsessive Compulsive Disorder (OCD). However, she is only taking 5 mg Prozac and I don't see any benefit. I'm not sure what to do next as I am afraid to increase the Prozac--afraid that it will trigger mania. I would be really interested to hear how much you have to increase your son's Prozac to obtain a therapeutic effect.

    Incidentally, I have another child with Obsessive Compulsive Disorder (OCD)--my 22-year old son. I did not know he had it (in fact, did not know what Obsessive Compulsive Disorder (OCD) was) until he was 15, which was about the time my daughter was born. I had taken him to the doctor to be treated for depression and he casually mentioned to me that the doctor said the Paxil prescribed for his depression would be good for his Obsessive Compulsive Disorder (OCD) as well. I said "What's Obsessive Compulsive Disorder (OCD)?" I found out that lots of things I thought were merely eccentricities of his personality were manifestations of his Obsessive Compulsive Disorder (OCD). His main symptoms are an extreme need for symmetry--has to "even" everything up--and a hoarding compulsion. He cannot throw anything away, as he is afraid he will need it someday, even if it is absolute junk.

    I would love to hear how your son is doing--particularly if the Prozac helps and if there are any negative side effects as you increase the dosage.

    Good luck.