My 5 yo just told me about his SECRET OCD!

[butterflymom]

=

Edited October 5, 2015 by tampicc

[Mary M]

What a bright and amazing young boy. So important that he shared his big secret with you. Perhaps he might qualify for the NIH study?

[butterflymom]

=

Edited October 5, 2015 by tampicc

[Kayanne]

My 5 yo boy presented mainly with adventitious movements, tics, hyperactivity, and emotional lability. He's on his third trial of abx and improves on them. I've been wondering if he had OCD, and it hasn't been clear. . . . .BUT NOW IT IS! He just had a conversation with me tonight about his secret compulsions. Here's the thing I wish I knew. . . .is it getting worse and worrying him, or is he healing and getting better and is now able to talk about it?

 

I was frustrated tonight that he wouldn't get his PJ’s on after the bath on his own, and had to direct him step by step, and I told him he’s nearly 6 and should be able to do this himself.

 

He says, “I’m just a rare kinda kid. I’m really smart and can do my work, but sometimes I don’t. I can get dressed really well by myself but sometimes I just don’t. I just don’t want to. Do you want to ask me questions about how I’m a rare kid?. .. . . . . I like to make sure when I walk that I end on the opposite foot I started. (demonstrated) When I touch something with one hand for one second I like to touch it with the other hand so it is fair. Sometimes I say words and sounds for no reason when I don’t need to, but I decide to do it, so I guess that’s a reason. Like “egg” or squeaks. I’ve never told anybody these things before. I was kinda keeping them secret.”

 

OMG!!!!!!! I had NO IDEA about any walking or touching compulsions, and have been wondering about the vocals (posted yesterday) . . . . . and here now this is classic OCD I read about every day on the PANDAS forum.

 

I don't want my boy to get really bad!!!!!!! I'm thinking of going with the IVIG to try to shut it down. Will it shut it down?

 

I wanted to say that if he is able to tell you about it, he may be on the healing side of it, and not the increase end of an exacerbation.

 

But that is just my gut feeling...I am by no means an expert. I am pretty sure that others on the board who know so much more about OCD will chime in.

 

Emotional lability was one of my daughter's major symptoms...I now believe that it was not a separate thing from the OCD, rather the OCD caused her to get so upset...she would cry for hours -- NEVER being able to tell us why.

 

Now when she gets very upset - If she can articulate why, then I breath a sigh of relief. I'm just guessing that if your Son's OCD was still really bad, he would still be holding his secret in...

 

I have to say this is one of my biggest fears, that she is hiding OCD, and silently suffering. However, for the most part her life is not affected at all by any traces of OCD.

[thereishope]

Wow, I'm impressed he told you all that and that he's aware it's not within the norm.

 

Can you remind me what the sequence of events was? This all started two weeks ago? It actually may be worth taking him back to the dr for another strep test and to rule out any other infections. Maybe something would show up now.

 

My 5 yo boy presented mainly with adventitious movements, tics, hyperactivity, and emotional lability. He's on his third trial of abx and improves on them. I've been wondering if he had OCD, and it hasn't been clear. . . . .BUT NOW IT IS! He just had a conversation with me tonight about his secret compulsions. Here's the thing I wish I knew. . . .is it getting worse and worrying him, or is he healing and getting better and is now able to talk about it?

 

I was frustrated tonight that he wouldn't get his PJ’s on after the bath on his own, and had to direct him step by step, and I told him he’s nearly 6 and should be able to do this himself.

 

He says, “I’m just a rare kinda kid. I’m really smart and can do my work, but sometimes I don’t. I can get dressed really well by myself but sometimes I just don’t. I just don’t want to. Do you want to ask me questions about how I’m a rare kid?. .. . . . . I like to make sure when I walk that I end on the opposite foot I started. (demonstrated) When I touch something with one hand for one second I like to touch it with the other hand so it is fair. Sometimes I say words and sounds for no reason when I don’t need to, but I decide to do it, so I guess that’s a reason. Like “egg” or squeaks. I’ve never told anybody these things before. I was kinda keeping them secret.”

 

OMG!!!!!!! I had NO IDEA about any walking or touching compulsions, and have been wondering about the vocals (posted yesterday) . . . . . and here now this is classic OCD I read about every day on the PANDAS forum.

 

I don't want my boy to get really bad!!!!!!! I'm thinking of going with the IVIG to try to shut it down. Will it shut it down?

[advocatemom]

What a big love he is!!! Give him a hug from all the PANDAS parents! So PROUD of him to verbalize so articulately!

 

DD11 had all the similar OCD symptoms -- touching things with both hands equally, making sure to walk through a door with the same foot first all the time.... When this became apparent and she finally was able to verbalize these things, she said she had been hiding them for 4 YEARS!!

Now we are a close knit family and SERIOUSLY???? We did not see all of this stuff? Once, about 2 years ago we noticed her having to sit exactly in the middle of the dinner table but that was our first inkling.

 

These kids are so clever and expend SO much energy to hide/manage their obsessions and compulsions. When our daughter's OCD started becoming too much for her, that's when life spun completely out of control and we crashed hard. It took the assistance of her psychologist to help her identify and verbalize. She was so afraid that we'd all think she was a freak. (snif, snif, dabbing the eye)

 

DD is having IVIg next week. We are very hopeful and prayerful for recovery! We'll keep you posted.

[norcalmom]

The better my son got, the more he shared with me. I think these kids are very aware of what is "normal" . And they hide alot of stuff. That's another reason I hate the pandas definition - a kid cold have OCD, and you wouldn't know, bcs. they don't tell you. AND not all the OCD behaviors fit a specific identifiable, observable, behaviors that we (and the doctors) know as OCD. My child is perfect example of that. His "OCD" started as being a pain in the $#@ at the dinner table. He would reprimand his sister for talking with food in her mouth, chewing with her mouth open, making noise with her utensils...and then he started to do it to me and his dad...he would b come irritated and angry and give you dirty looks (he cold only look becasue he got shut down from making comments on our eating)..pretty soon I would play music during dinner (loudly!) and then I let him sit at the breakfast bar away from us...I had no idea this was OCD - and I don't hink a doctor would either..it took a while to fully develop. Now he eats in the other room.

 

We just chalked it up to him being almost a teen, and having a teen sister and normal bickering..that just became a "thing" for him. I never even MENTIONED this or thought much about it until it really became defined and I learned about intrusive thoughts, and he really started to zone in on me - he told me " when you swallow mom, I see that in my head for like 20 minutes and can't get it out"...but he wasn't able to articulate that for a few months...it evolved to just me, and he seemed like he just wanted to be the superior know it all about table manners and have a reason to bicker with his sister.

 

His other compulsion (looking into the sun) hey - thats not any OCD list either - AND he hid it for weeks. I NEVER would have know. 1 )I'm not outside with him all the time - he's 11 now, and was doing this mostly at baseball practice and recess. 2) it doesn't look like he is looking into the sun - it looks like a tic (and he can diguise even the tic-like movement with another movement - which he does)...no one even notices it but me because I stare only at him during baseball games. He only told me because he was afraid he would go blind!

 

He's told me a couple other minor things he used to do prior to IVIG that he doesn't anymore - that I NEVER knew about or observed - one he mentioned the other night - he liked things in threes. He recently revealed this to me. I've never observed any counting, or number preference before...but he knew it was odd, and he hid it, and only now that he is better did he tell me.

 

PANDAS cannot be diagnosed by an MD. They don't know enough about mental illness and specifically what OCD entails and how to question and get a kid to open up about it.

 

I think the fact that your son is telling your about this stuff is a sign he is getting better - my son wasn't able to open up to me, or identify it himself until he felt well. After ivig he got a cold at 7 weeks, and he came out of school one day freaking out that he felt "all pandas-y"..and told me stuff that he wanted to do and was trying not to. Prior to IVIG, that feeling was the norm for him, so he couldn't identify it, and wanted to hide the behavior (I think this is a natural protective instinct they have...fear)

[butterflymom]

=

Edited October 5, 2015 by tampicc

[momcap]

he told me " when you swallow mom, I see that in my head for like 20 minutes and can't get it out"...

 

That brings back memories that I didn't even know I had. I had a PANDAS-like syndrome, starting in my early teens. Now that you wrote that, I can remember my Mom's eating sounds driving me absolutely crazy. Not that she did anything abnormal - just the sound of her chewing and swallowing made my skin crawl. Nobody else bothered me. I KNEW this was odd and didn't want to hurt her feelings, so I tried to hide it from her, usually by leaving the room. I'm sure my parents chalked it all up to teenage issues for me too. Weird. I also remember having to walk certain ways on tiles, but I was very conscious of other people and not being obvious. And I remember there was no possible way to make my pattern on the main bathroom floor, so I quit using that bathroom unless it was an emergency, and then I got extremely agitated and tried to jump across the floor and touch it as little as possible. I still have residual OCD stuff, like having to eat coloured candies in order and evening out the numbers. But now it's just annoying little things, and not interfering with my life. In fact, it's entertainment for DH, when he grabs a candy from my hand out of order just so he can watch me freak out. LOL.

 

I also did not know my PANDAS son had OCD until recently. Once on antibiotics and beginning to heal he started sharing a little bit. I still don't know how much OCD he has. Mostly it comes out as defiance and anger when he's unable to do something he feels compelled to do.

[SarahJane]

Wow. I'm glad he's talking to you about it. I didn't realize our son's exacerbations lined up like they do. While we did have the first one starting in Jan '10 & lasting months but undx'd. The 2nd one started the week before Labor Day when he was constantly whispering "just kidding" and told me he couldn't stop, & we spiraled down from there over the next weeks to IVIG in Nov. My thoughts are with you while you try to decide. Maybe the abx will work for you tho'. It's got him talking about it anyway. Maybe you can try to determine if it's residual effects/learned behaviors or PANDAS driven.

[smartyjones]

. .is it getting worse and worrying him, or is he healing and getting better and is now able to talk about it?

 

 

of course, every kid and every presentation is different. for my son, i consider when he mentions something as a step in the right direction of healing. we can kind of determine is i ask if something is a certain way "just because", "there's a reason", "there's a reason no one can ever know" (bad sign). at times that have been bad, there seems to be a lot of reasons no one can know. i'd tend toward thinking this is a good sign in your case that he is discussing it.

 

good luck.

Edited January 26, 2011 by smartyjones

[VickyLH]

I've also noticed my son is more able to talk about his OCD when he's having a good day. On days when it's overwhelming for him, he just shuts down and won't say or respond to anything. So I think the fact that your son is talking about it is a great sign!! Here's to his continued recovery. I hope we follow in your footsteps. He sounds like such a bright child!

 

By the way, I had to laugh that you got frustrated by your six year old not being able to get dressed.... try dealing with that in an eleven year old before you realize it's OCD/PANDAS. Our poor son has struggled with OCD and PANDAS for years, and we didn't even know it. I feel horrible thinking of all the times we got frustrated and yelled at him for his behaviors. It was mostly because he tried to hide it from us, so we saw his actions as a choice rather than a compulsion.

 

Best wishes!

[butterflymom]

=

Edited October 5, 2015 by tampicc