Need help understanding OCD

[monarchcat]

It's become very clear lately that maybe ds DOES in fact have quite a bit of OCD. We've never quite realized that many of his behaviors, etc. are actually OCD in nature, but I'm starting to believe they are. They are not overt OCD-type things like checking, counting, contamination fears, but more in his rigid, inflexible way of thinking, etc. Please tell me if these sound like OCD traits to you:

 

1. In the winter he WILL NOT wear a coat. He simply refuses. He has a flannel "layer shirt" that he will wear over a t-shirt, and ONE sweatshirt that he is comfortable wearing and that's it. If I tell him to wear a coat he will say, "I look STUPID in a coat!! NO ONE wears coats!! I look ridiculous and stupid!!!" We live in Massachusetts. If you aren't wearing a coat in January you look pretty damn silly, but he does not see that. He TRULY believes what he says.

 

2. He constantly thinks that his hair looks awful. In the mornings, he makes me wet it down and brush it to make sure nothing is sticking up, but it is never ok. He always thinks it's "puffy" or sticking up and that he looks, "stupid and ridiculous". It doesn't prevent him from getting out the door, but it always puts him in a bad mood.

 

3. He can be in a good mood, but if something triggers him he will have an episode of total irrationality. I'll give you an example that happened a little while ago: He was in a good mood and went down the basement stairs to play a game. He fell on the stairs and banged his arm and, more than anything I think, scared himself. He started to cry and I went down and tried to hug him, see where it hurt, etc. He wouldn't let me and started saying a very common refrain of, "You don't care, you hate me, why are you being so mean to me? You are so stupid. I hate you! You are the worst. You are SO stupid." No matter what I say or do, he acts as though I am yelling and being mean to him. This is sort of typical pandas-y irrationality, but what makes me think of OCD is that he CAN'T let it go. If I try to end the conversation he will follow me and INSIST on still talking. He HAS to say all the stuff about me being mean, and how much he hates me and how stupid I am, etc. He simply HAS to engage me as much as he can, even though there is nothing productive and no way to resolve it on his terms. Usually this kind of event will only end because I (or his father) get so fed up that we lose our cool and DO yell, and put him in his room, sometimes having to physically put him there. After a while, he'll be ok again - loving and sweet.

 

4. He is what I have mostly termed "paranoid" about many things. He is convinced that other kids can do everything that he is not allowed to do. For example, if I say his bedtime is 9pm, he is CONVINCED that "everyone else" gets to go to bed much later and cannot be convinced otherwise, even if we were to poll every 9 year old in the state and they all said their bedtimes were 9pm or earlier. Wouldn't matter.

 

These are just a few examples, but the more I think about it the more it seems like it may be OCDish, but I have no real experience with OCD. What do you guys think? What are some good websites for learning more about OCD?

 

BTW, for reference, he's been on abx since August and we've seen improvements, but it's almost like since I've seen improvements in basic mood/behavior now I recognize more of the long-standing, underlying issues that are still there.

[thereishope]

1. the coat....with my son it was a struggle with every season as the change in attire occurred. we had to prep him and start on the weekend. His main thing during his last exacerbation was wearing a hat or hood. He HAD to wear a hat or hood. He could not be seen w/o one. That one we had to help him get over.It didn't go away on its own.

 

2. hair. Oh, boy did we have that. My son had a crew cut. There's no way it could be messed up. But he was CONVINCED it was. He'd have to stand there "flattening" his hair out since he said it was messed up. Then it got extreme to the ppint that he hit and slapped his head while fixing it.

 

3. we walked on eggshells all the time. You never knew what would set him off. We lived with Dr Jeckyl and Mr Hyde. For some reason he'd get mad at us and say "YOU'RE FIRED". and, no he did not watch the Apprentice.

 

4. Okay, I don't think we had that. Oh,wait, what he had is that everything HAD to be his way. He would find a way to combat what you had to say even if it was in his favor. He could not bring himself to follow your direction to a tee w/o altering it somehow.

 

As for what catagory everything falls in, it depends. I can see OCD, sensory, ODD. My son did have sensory problems too, but all of the above I believe for my son was OCD and ODD. I was once told that ODD can result from OCD not being fulfilled or soemthing like that.

Edited April 9, 2010 by Vickie

[monarchcat]

He would find a way to combat what you had to say even if it was in his favor.

 

Ahh!! This is my son to a tee. I could be 100% agreeing with him and he would STILL argue. Which is why it makes me think compulsion.

 

I'm sorry, but I LOL'd at "You're fired!"

[Suzan]

I'm still learning about OCD and how it affects us here. But your examples sound VERY familiar to me.

 

1. My dd8 hates to wear a coat but she will since she is cold (this is a more recent learned thing, when she was younger it was much more difficult). If she can get away without wearing a coat, she will and I stopped a long time ago forcing a coat. She's responsible for her own temperature comfort now. However.... (see #2)

 

2. The main reason she does not want to wear a coat is because it messes up her hair. She can be thrown into an ocd episode very quickly if she thinks her coat is messing up her hair! If she does not have time to fix her hair or thinks her hair may not be OK, she is very upset and all reason goes out the window.

 

3. "He can be in a good mood, but if something triggers him he will have an episode of total irrationality." This is us 100%. It can be easy or hard to know what will set her off. Some is predictable and others not. The other day, her sister wrote on her hand on purpose with a ball point pen when she did it to her sister on accident. It was a long episode after that.

 

4. She does always think she is right and there is no convincing her otherwise. But when I realize this is going on and just say "OK" or "yes" or "fine" or anything to appease her, she knows right away and won't let me get away with it and we start the push-me-pull you thing where neither one of us can win and it tries my patience more than anything else.

 

As far as being able to see the OCD more after being on abx, I agree with you there. I think having her improve has helped me to be able to see her more clearly since she is not a complete mess all the time and so her OCD became more apparent to me. Also, learning more about OCD here on the board has helped me a lot. I've been a slow OCD learner.

 

Susan

[MomWithOCDSon]

We've been living with OCD in our house for the last 6+ years, and while I can see some "fragments" of compulsive behavior in some of the things you've mentioned, I have to say that they don't really fit in with our experience of what might be classically considered OCD. As someone else said, they seem as though they may be a little sensory or maybe even ODD, but not necessarily driven by compulsions or obsessions.

 

Also, the insistence on continuing with a line of conversation in which no one but him has any interest, following you around the house to continue to talk about it, even when you've made it clear that, as far as you're concerned, the topic is a dead horse and you're done beating it?!?! I can TOTALLY relate! Lately, that's almost an everyday occurrence in our house!

 

Frankly, that sort of behavior, from what I've read and seen, is almost more on the autism spectrum side of something like Aspergers than it is OCD; an intense interest in, and inability to deviate from, what's on his mind at THIS particular minute! It is SO important to him, it should be THE topic of interest for the whole planet! And he cannot imagine how or why you wouldn't find the topic equally scintillating!

 

Please understand, I'm not suggesting your kid or mine has autism or Aspergers. But I do think this sort of "mixed nuts" kind of cognitive inflexibility on all fronts is emblematic of PANDAS. In the last several months, our psychiatrist has frequently said that DS is "a real mixed bag," but that "mixed bag" seems to pretty readily describe a lot of the kids described here by their parents, and it all seems to be part and parcel of PANDAS. Some kids' behaviors fit better inside the OCD box, some fit more readily into the sensory box or the ODD box, but they all seem to be manifestations of some wires or impulses getting crossed, supposedly because of the inflammation.

 

For an introduction to all things OCD, I would point you to the Obsessive Compulsive Foundation of Chicago web site. Not only do they have materails available for download designed for parents, educators, teenagers, etc., but they have these great articles drafted by doctors and practitioners in the field that address a lot of the particulars (click on "Expert Perspectives"; some of my DS's OCD behaviors I didn't realize were related to the OCD until I read some of this stuff. Here's a link:

 

Obsessive Compulsive Foundation of Chicago

 

If you find, after browsing through there, that your son's behaviors still appear and "feel" to you to be compulsion or obsession driven, then there are several threads here (just search "OCD") on the topic; Meg's Mom, in particular, has loaded several threads with reading lists and resource lists for OCD help.

[thereishope]

I think with PANDAS, for me, it gets to the point that I don't take each symptom and pick a catagory for it to fall in. A lot of times you can't know everything your child is thinking to be able to catagorize it. A lot of different actions or behaviors can fall under different umbrellas.

 

As for whether behavior fall more into an Aspergers trait vs OCD, again, I wouldn't get hung up on it. A good number of parents on this forum have been told their child showed autistic qualities while in an exacerbation or needed to be screened. And this questioning came as a result of the behaviors surfacing during PANDAS. However once recovey from PANDAS occurs that question of autism or Aspergers the school or med person said is gone.

[Chemar]

We've been living with OCD in our house for the last 6+ years, and while I can see some "fragments" of compulsive behavior in some of the things you've mentioned, I have to say that they don't really fit in with our experience of what might be classically considered OCD. As someone else said, they seem as though they may be a little sensory or maybe even ODD, but not necessarily driven by compulsions or obsessions.

 

I do think it is very important to remember that when OCD is occurring as a comorbid or resultant condition with something else, that it frequently doesnt manifest in the "classic" or "textbook" way

 

we learned this the hard way with my son's Tourettic OCD, and our psychiatrist explained how OCD occurring as part of a syndrome can manifest variably, and not always be recognized in the way the more defined parameters of "classic" OCD are

 

I would think this is the same for the PANDAS child

Edited April 10, 2010 by Chemar
spelling

[Suzan]

I found this site today which I found helpful

 

http://understanding_ocd.tripod.com/ocd_symptoms.html

 

With my daughters, I have trouble knowing the "why". What makes them do what they do so I still have trouble knowing what is OCD or not since they don't manifest in what I considered typical OCD. I think their sensory stuff, fears and perfectionism and just right or not just right really does fall into OCD when in the past we thought it was other stuff. They don't seem to have compulsions too much, just obsessions although there are a couple that I can recognize as compulsion.

 

Susan

[tapiash]

1. the coat....with my son it was a struggle with every season as the change in attire occurred. we had to prep him and start on the weekend. His main thing during his last exacerbation was wearing a hat or hood. He HAD to wear a hat or hood. He could not be seen w/o one. That one we had to help him get over.It didn't go away on its own.

 

2. hair. Oh, boy did we have that. My son had a crew cut. There's no way it could be messed up. But he was CONVINCED it was. He'd have to stand there "flattening" his hair out since he said it was messed up. Then it got extreme to the ppint that he hit and slapped his head while fixing it.

 

3. we walked on eggshells all the time. You never knew what would set him off. We lived with Dr Jeckyl and Mr Hyde. For some reason he'd get mad at us and say "YOU'RE FIRED". and, no he did not watch the Apprentice.

 

4. Okay, I don't think we had that. Oh,wait, what he had is that everything HAD to be his way. He would find a way to combat what you had to say even if it was in his favor. He could not bring himself to follow your direction to a tee w/o altering it somehow.

 

As for what catagory everything falls in, it depends. I can see OCD, sensory, ODD. My son did have sensory problems too, but all of the above I believe for my son was OCD and ODD. I was once told that ODD can result from OCD not being fulfilled or soemthing like that.

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My son has a hair issue too. It has to be perfect. He likes for it to spike. It has to look wet. Anytime he leaves the house he wets and puts gel in it. I finally cut it fairly short the other day. It seemed to help. It has started to grow back. Today we were heading to church and I noticed a big chunk of hair missing. He lied and said it has always looked like that but finally he fessed up and he said he likes it short. My husband says he is going to make him leave it it like that so people can tease him and he can learn a lesson. Awwww is all I can say. My husband just doesn't get it.