Am I crazy and he's normal? :-)

[poetmom]

I'm baffled still by my son, who was diagnosed 2+ yrs ago. Most people are unable at this point to recognize the lingering symptoms, but I see the continued albeit GREATLY DEMINISHED signs, particularly sensory issues (i.e. his shoes and pants are rarely tight enough to be comfy).

 

And I struggle to figure out the difference between now mild OCD stuff and the drive of a highly motivated, intelligent little boy.

 

Case in point: at 5 he's reading and writing far above expectations... but is it NORMAL for a 5 year old to go through a 400 page book of Pokemon characters and copy down all their names in a notebook??? Is it normal for him to want to sit next to me and fill pages and pages and pages (2-3 hours sometimes) with whatever words he can think of so he can learn to spell them... "let's write words, Mommy!"

 

I asked his Kindergarten teacher about it as a sounding board/reality check to whether other kids do stuff like this to this degree or if this falls in the OCD category (because he doesn't want to do anything else on the days he starts this). I wanted to know if I should be gently steering him in another direction.

She was happy and said she wished more of her kids did stuff like that and to just let him.

 

But I can't help like feeling some of this stuff just ain't normal 5yr old little boy stuff.

 

He's come so far and is now interactive, interested, motivated, curious... but I worry you know that I'm going to chalk it up to "weird little kid stuff" and realize belatedly we've spiraled headlong into a full-blown catastrophic episode again. Maybe I'd just like to believe there's more I can do to STOP that than there really is, anyway...

 

Opinions, please.

[peglem]

My honest opinion is that its not normal, but normal is relative! But, its only a problem if it is interfering significantly with his being able to do other things-If its not getting in the way of his schoolwork or functioning at home then its not such a bad thing. It may even work to his advantage. People who have accomplished really great things seem to have this ability to be all consumed by their passions. This drive could serve him well in life!

In the mouse model paper, if I'm remembering right, it was pointed out, that in some ways the PANDAS mice had an edge over the "normal" ones, and that edge was a kind of hyperfocus (or obsession) on reaching goals.

[LNN]

I guess I'd like to know more about his motivation for doing this for hours...is he doing it because he HAS to - if he stops, is he afraid something will happen? Will he rage if he isn't allowed to do this? Is his desire to learn how to spell words driven by perfection - that he'll somehow be a failure if he doesn't know how to spell a word?

 

Or is it a fascination or fixation - more like you'd see in Asperger's?

 

It's nearly impossible sometimes to tell what motivates a 5 yo, and they very often can't look inward and articulate their feelings. But what drives the behavior is important in determining what to do about it - if anything.

 

You don't describe any other PANDAS symptoms - is this "obsessing" the only behavior you're seeing or are there others?

[thereishope]

One of the biggest problems is getting to know your child again and determining what is remaining PANDAS and what is the quirkiness of your kid. I agree with LLM. Find out the reason behind the writing and such. I still "test" my son. If I see he is taking something to the extreme, I say/do something to him that I know darn well would upset him if it was PANDAS. Even with 5 year olds, they are still creatures of habit. So if I notice our bedtime routine remains the same for 3 nights, I make sure I change it up on night 4 to see his reaction.

 

My son is 6. He'll sit at the table for an hour drawing super heroes and they need to be the right way. But I know that's him. I can't explain it. I know it's something not to be concerned about. Now if I tell him it's dinner and he needs to clean it up and he has a full blown tantrum over it. Well, the next day I'll get him a strep test.

[ajcire]

My son will do things like this just not to that extreme. He too was reading by 3, spelling at 4... would walk around spelling things... If someone shows him how to draw something at school... every day for a long time after he comes right up and does it at home. It doesn't impact him though... it is hard to tell if it's just that is where his interests are or if it is more that he needs to. I used to worry about him because at the age of 3 he wanted to do worksheets after worksheets... at play time he didn't want to play with the toys and run around with the other kids in his preschool. A psychologist told me that I should not try to change his form of play because who is to say what play is. If he enjoys worksheets that I should let him be. He would still interact with people... preferred board games with a grownup to doing worksheets when it was an option. In hindsight I do think some of that personality is related to pandas but it's part of who he is and a part that I verey much enjoy in him.

 

I think that the previous responses are good... as to whether he has an issue if he can't complete this or if it's just something he chooses to do if he has the time to do it.

[momaine]

LIke someone else said, is he doing it because it makes him happy or because he feels drived to do it and would be miserable if he could not. If he is happy doing it, I'd say it could be normal for him. My kids are very bright and have always done things in phases. They get into something and do a LOT of whatever it is till they burn out and move on to something else.

Angela

 

 

I'm baffled still by my son, who was diagnosed 2+ yrs ago. Most people are unable at this point to recognize the lingering symptoms, but I see the continued albeit GREATLY DEMINISHED signs, particularly sensory issues (i.e. his shoes and pants are rarely tight enough to be comfy).

 

And I struggle to figure out the difference between now mild OCD stuff and the drive of a highly motivated, intelligent little boy.

 

Case in point: at 5 he's reading and writing far above expectations... but is it NORMAL for a 5 year old to go through a 400 page book of Pokemon characters and copy down all their names in a notebook??? Is it normal for him to want to sit next to me and fill pages and pages and pages (2-3 hours sometimes) with whatever words he can think of so he can learn to spell them... "let's write words, Mommy!"

 

I asked his Kindergarten teacher about it as a sounding board/reality check to whether other kids do stuff like this to this degree or if this falls in the OCD category (because he doesn't want to do anything else on the days he starts this). I wanted to know if I should be gently steering him in another direction.

She was happy and said she wished more of her kids did stuff like that and to just let him.

 

But I can't help like feeling some of this stuff just ain't normal 5yr old little boy stuff.

 

He's come so far and is now interactive, interested, motivated, curious... but I worry you know that I'm going to chalk it up to "weird little kid stuff" and realize belatedly we've spiraled headlong into a full-blown catastrophic episode again. Maybe I'd just like to believe there's more I can do to STOP that than there really is, anyway...

 

Opinions, please.

[harmony]

I'm baffled still by my son, who was diagnosed 2+ yrs ago. Most people are unable at this point to recognize the lingering symptoms, but I see the continued albeit GREATLY DEMINISHED signs, particularly sensory issues (i.e. his shoes and pants are rarely tight enough to be comfy).

 

And I struggle to figure out the difference between now mild OCD stuff and the drive of a highly motivated, intelligent little boy.

 

Case in point: at 5 he's reading and writing far above expectations... but is it NORMAL for a 5 year old to go through a 400 page book of Pokemon characters and copy down all their names in a notebook??? Is it normal for him to want to sit next to me and fill pages and pages and pages (2-3 hours sometimes) with whatever words he can think of so he can learn to spell them... "let's write words, Mommy!"

 

I asked his Kindergarten teacher about it as a sounding board/reality check to whether other kids do stuff like this to this degree or if this falls in the OCD category (because he doesn't want to do anything else on the days he starts this). I wanted to know if I should be gently steering him in another direction.

She was happy and said she wished more of her kids did stuff like that and to just let him.

 

But I can't help like feeling some of this stuff just ain't normal 5yr old little boy stuff.

 

He's come so far and is now interactive, interested, motivated, curious... but I worry you know that I'm going to chalk it up to "weird little kid stuff" and realize belatedly we've spiraled headlong into a full-blown catastrophic episode again. Maybe I'd just like to believe there's more I can do to STOP that than there really is, anyway...

 

Opinions, please.

If these behaviors are interfering with his life then I would be concerned. (ex- refuses to eat, sleep or play because he is all consumed in writing words. Or has tantrums/anxiety issues that cannot be calmed while writing down Pokemon names- feeling the need to make them perfect??)

If he seems happy and content while doing these things and can still function normally- I would not be too worried- I would probably be excited (child interested in learning - that is awesome) And if that is the case, I would agree with his teacher- this can be a GOOD thing (I was a teacher and director of a private school for years- until I had to quit with my sons first PANDAS episode). Kids learn in many different ways.

Good luck and let us know how it goes,

I hope this help!

[tantrums]

Oh the similarities! So I'm wondering if it's the age group or the PANDAS? My son is 6 and also consumed with Pokemon and Superheros. pretty sure that part is "normal" But mine also will spend long periods of time writing their names and creating "books" about them. Now, I or my DH have to write the words in the books for him because he is afraid to write them wrong. Then we have to re read them to him twice so he knows WE wrote the words correctly. If it's wrong, he'll rip it up in a fit of anger.

 

His new thing is and I know this is PANDAS - he HAS to draw one picture of 8 small superheros before bed every night. I mean, I tell him it's bedtime and he will RUN away from me, grab a paper and crayon and go for it. It doesn't matter what they look like or if they are just scribbles, as long as it's done. He can't stop to do anything until those 8 superheros are drawn - last night DH was waiting for him to get in the shower and he ended up waiting quite a while because they had to be done properly. We've come to accept that because it doesn't take very long and at this point, anything I can do to keep peace at bedtime... Always worried about it expanding though

[LNN]

Now, I or my DH have to write the words in the books for him because he is afraid to write them wrong. Then we have to re read them to him twice so he knows WE wrote the words correctly. If it's wrong, he'll rip it up in a fit of anger.

 

His new thing is and I know this is PANDAS - he HAS to draw one picture of 8 small superheros before bed every night. I mean, I tell him it's bedtime and he will RUN away from me, grab a paper and crayon and go for it. It doesn't matter what they look like or if they are just scribbles, as long as it's done. He can't stop to do anything until those 8 superheros are drawn - last night DH was waiting for him to get in the shower and he ended up waiting quite a while because they had to be done properly. We've come to accept that because it doesn't take very long and at this point, anything I can do to keep peace at bedtime... Always worried about it expanding though

 

This behavior might be caused by Pandas, but the behavior and thoughts behind it are OCD. Regardless of why it's there, giving in will only make it worse. It will expand and morph if it's allowed to. It nurtures the fears and rituals and by appeasing, you send the message that he's right to be afraid, that there is "truth" in whatever he's believing. Your actions say "Mom and Dad think you're right to listen to that voice" and the voice grows stronger. Believe me, I know how hard bedtime can be and how things can fall apart in a split second. I know the rage that comes from not letting them follow their scripts. I've been there many many times. But you might want to read a few children's books with him like Up and Down the Worry Hill, or What to Do When You Worry Too Much for anxiety. It describes worries as tomato plants - water and nurture the plants and they grow like weeds. Ignore them and they wither and die. It didn't get rid of our son's OCD rituals, but it did help him understand what was happening, gave him a vocabulary and let him know that we understood, so he didn't have to feel it was something he couldn't talk about (which only makes their anxieties worse and their imaginations run wild).

 

In the same way you may have had to explain to your son that he's "allergic" to strep or some other medical explanation for what's going on, kids need to know what's happening to their thoughts and emotions. What To Do When Your Brain Gets Stuck is also an excellent book for OCD. You don't have to call it OCD if you don't want to. But the tools to make things less scary were a big help. It took a very scary time for all of us and made it seem like something we could manage.

[tantrums]

Those books sound fantastic! I'm going to look for them and get them tonight.

 

As for allowing it - I know. I do. I guess we're trying to "pick our battles?". We've just gotten to this place of learning how to keep him from escalating and we're getting pretty good at it to some extent. HOwever, I certainly do worry about allowing it to expand and get worse when we allow it

[LNN]

Those books sound fantastic! I'm going to look for them and get them tonight.

 

As for allowing it - I know. I do. I guess we're trying to "pick our battles?". We've just gotten to this place of learning how to keep him from escalating and we're getting pretty good at it to some extent. However, I certainly do worry about allowing it to expand and get worse when we allow it

I just want to clarify one thing as I re-read my post. The anxiety books didn't get rid of the rituals because that wasn't why we read them- they helped with the anxiety issues.

 

The What to Do When Your Brain Gets Stuck book is for the rituals - it's basically a step by step book for kids on how to recognize an OCD thought, the need to boss it back, and several tools on how to do this. It is a lot of hard work. And it's tempting to not work on it if you know that antibiotics can do much for knocking symptoms down. But it does help keep the next episode from escalating and it does teach skills on how to manage all of your thoughts and emotions - skills that help into adulthood even when you don't have OCD. Having something to "work on" can give everyone a sense of control - like you might clean when you're really nervous. At least you're doing "something" and if you stick all with it, the hard work pays off. It helped us a lot. If you want ideas on some examples, PM me.

 

Laura

[tantrums]

Maybe it will help me quit smoking! (disclaimer ONLY outside and I even change my shirt every time I come back inside the house and wash my hands). That's been WAY up in me since this has started

[LNN]

Maybe it will help me quit smoking! (disclaimer ONLY outside and I even change my shirt every time I come back inside the house and wash my hands). That's been WAY up in me since this has started

 

In its most basic form, it's the same idea. Your smoking is something you do as a habit or as a reaction to an uncomfortable feeling. No one can reason with you about quitting. You know it's bad for you, you know it's expensive, you know its bad for your kids...But the urge to continue is so strong because doing it makes you feel better. It relieves a stressful feeling (the addiction factor may also make it enjoyable, but I'm only trying to draw the parallel to OCD here).

 

So when you're trying to quit smoking, or lose weight, or exercise - first you have to want to. But wanting to isn't enough. You then have to catch yourself having "urges" or in your son's case, OCD thoughts. Then you have to have a conversation with yourself to break the "automatic" nature of your response. And you have to use tactics - like delay - no, I won't have a cigarette (or a brownie) on the drive home. I'll wait until I get there. This is how some people cut down from 20 to 10 to 5 before they quit. Or maybe you'll make yourself busy with something else as a distraction. The urge might still be there, but you consciously try to push it out of your mind. The longer you're successful, the easier it gets.

 

When someone with deep religious beliefs gets anxious, he can sometimes stop the worry loop by telling himself he's going to leave it in the hands of a higher power. When someone gets anxious about a high profile project at work, he might break the worry loop by doing a serious of "what's the worst that can happen?" kinds of inner conversations to try to de-escalate the feelings. When an athlete visualizes himself pitching the perfect game the night beforehand. he's training his thoughts. These are all ways adults learn to manage worries.

 

Kids don't have these skills. So when anxiety and OCD take over, they don't know what's happening and they're not experienced in taking control of their own thoughts. They are often in positions of "having to listen" to what others tell them. So it's really hard to think about "rebelling" against an OCD thought, especially when that OCD thought is telling them something really realy bad might happen if they don't do the ritual. But it can be so empowering when they do, even in the smallest of ways. At a time when everything is turned upside down and nothing in their brains is working the way it used to, even small successes can mean a lot - to the whole family. It puts a light at the end of the tunnel and turns a victim into an active participant in his own recovery.

 

I'm sorry this is tangent to the original thread. It just hit close to home.

[momto2pandas]

My PANDAS ds, age 6, is just like this too, and has been for his whole life. (He's probably one of the few 3 year olds who has become consumed with drive to learn anatomy and had pictures of the excretory system, digestive system, etc. that he had drawn plastering his whole room -- "Mommy, my favorite body part is the large intestine!"). I don't worry about driven part too much since he seems to really relish his passions and projects, but the perfectionism concerns me and I have trouble handling it since I don't relate. It's hard to even point out a single spelling error without him getting REALLY upset and wanting to do the whole project again. I've noticed lately that his teacher sends his work home to me with notes saying "please correct this with him" and I wonder if she's having a hard time doing it at school and is thinking that it would be easier for me. During an episode, even a tiny one, I don't even try. Most of the rest of the time I can do it if I'm gentle about it but I feel like I'm walking on eggshells.

 

We also have this problem when he misbehaves. We can discipline him VERY lightly for something naughty he's done and he still goes on and on about being a lousy person, wails with dismay, etc. He doesn't seem to have any perspective about grey areas no matter how hard we try to explain things to him. This piece especially is hard to take since I can't let him e.g. yell something mean at his brother without saying something to him about it, but I hate the fact that no matter how gently I say something he still takes it hard. He's so very sensitive.

 

Incidentally, my Dad is OCD and probably PANDAS, and he's just exactly like my son, perfectionism and all. It may not be "normal," but as long as they choose personal and professional circumstances that are well-suited to their personalities, as my Dad did (he's a very successful scientist in an area that requires a lot of detail work), it can be a real advantage. Or so I keep trying to reasusure myself, anyway....

 

Anyway, I don't think that it's something that we can fight, at least in my ds's case it seems to be very ingrained in his personality.

 

 

 

 

I'm baffled still by my son, who was diagnosed 2+ yrs ago. Most people are unable at this point to recognize the lingering symptoms, but I see the continued albeit GREATLY DEMINISHED signs, particularly sensory issues (i.e. his shoes and pants are rarely tight enough to be comfy).

 

And I struggle to figure out the difference between now mild OCD stuff and the drive of a highly motivated, intelligent little boy.

 

Case in point: at 5 he's reading and writing far above expectations... but is it NORMAL for a 5 year old to go through a 400 page book of Pokemon characters and copy down all their names in a notebook??? Is it normal for him to want to sit next to me and fill pages and pages and pages (2-3 hours sometimes) with whatever words he can think of so he can learn to spell them... "let's write words, Mommy!"

 

I asked his Kindergarten teacher about it as a sounding board/reality check to whether other kids do stuff like this to this degree or if this falls in the OCD category (because he doesn't want to do anything else on the days he starts this). I wanted to know if I should be gently steering him in another direction.

She was happy and said she wished more of her kids did stuff like that and to just let him.

 

But I can't help like feeling some of this stuff just ain't normal 5yr old little boy stuff.

 

He's come so far and is now interactive, interested, motivated, curious... but I worry you know that I'm going to chalk it up to "weird little kid stuff" and realize belatedly we've spiraled headlong into a full-blown catastrophic episode again. Maybe I'd just like to believe there's more I can do to STOP that than there really is, anyway...

 

Opinions, please.