Losing our mind!

[HanHan]

Our dd8 repeats everything she says to us and wants us to repeat to her. She will keep adding more and more things on if we repeat what she wants. Example: I say whats is for dinner. She wants me to say it again, I say it again, she wants me to say it and move my arm a certain way, I do it then I have to do it 3 more times if I don't do it exactly right have to do it again and have my head turned a certain way and so on. If I don't comply she throws a fit- punching, kicking, screaming. Follows you everywhere. once somewhat not so explosive, she has to have you start from the beginning with what's for dinner.

 

I am so torn between standing for an hour or more giving into all the repeating or having her explode for hours and go in circles. I can see her brain is so stuck though. She has to recreate from the start.

 

Has anyone been through this? Any suggestion of what might help.

[beeskneesmommy]

When my son was in the throes of PANDAS, he was extremely controlling, to the point in which I got very irritated with him. Often. OCD is a powerful affliction. It's very hard on you, as the parent. I am sorry for this. Hang in there. Have you tried CBT in conjunction with mediacl treatment? -Kath

[Kiera]

This is severe OCD behavior! Have you started on the PANDAS/PANS journey yet? Throat swab, blood tests, antibiotics etc, etc?

[HanHan]

When my son was in the throes of PANDAS, he was extremely controlling, to the point in which I got very irritated with him. Often. OCD is a powerful affliction. It's very hard on you, as the parent. I am sorry for this. Hang in there. Have you tried CBT in conjunction with mediacl treatment? -Kath

 

 

Thank you. We were told pandas kids don't need CBT. We have decided after this week though we are going to look into it anyway.

[HanHan]

This is severe OCD behavior! Have you started on the PANDAS/PANS journey yet? Throat swab, blood tests, antibiotics etc, etc?

 

 

Yes, She has been on augmentin since Dec. The same severe behavior started then. She was diagnosed with pandas. After 5 days on abx, she was back to being her old sweet self. Over the past two months, when someone has been sick in the house her ocd behaviors have come back but only mildly. Last Saturday we saw it start to return again and each day it got worse. The past 3 have been unbearable. It is almost nonstop all day.

[MomWithOCDSon]

Thank you. We were told pandas kids don't need CBT. We have decided after this week though we are going to look into it anyway.

 

Oohh! I don't know who told you PANDAS kids don't need CBT, but some basic CBT skills can come in very handy during exacerbation at least on your part, even if your DD isn't in a place where she very willingly participates. More often than not, the real issue is that a kid in extreme exacerbation can be so riled up and/or disoriented in their executive functioning that the CBT doesn't appear to "take" until some of the inflammation and autoimmune onslaught has been arrested by medical interventions. But you won't know until you try.

 

On top of which, CBT skills are almost as important for the parents as they are for the kids. If OCD can, it will attempt to control not only the person suffering directly with the OCD, but all the other people in the immediate environs, namely parents. CBT will help you develop the skills to appropriately respond to your DD when she makes these "OCD demands" on your time and energy.

[LNN]

Totally agree with Nancy. Sometimes PANS kids get to a place where CBT/ERP isn't enough (again, until medical treatment takes things down a few notches) but it always helps the parents because it makes you feel less helpless. And it teaches everyone how to re-frame a problem and break it down into manageable baby steps. It goes beyond the immediate crisis and gives you life-long skills. Doing it over and over with my kids has also helped me manage my own natural anxiety. I find myself better able to talk myself out of a panic and do it without really thinking about it anymore.

 

Note- ER/P is a specific type of CBT used specifically for OCD. General CBT is better for other types of anxiety.

 

despite the pain of refusing to participate in rituals, I urge you not to give in. You can tell your daughter that you can't stop her from giving into her OCD but that you won't let OCD control you too. Giving in will only help the OCD grow stronger and sends her the message that her fears have some sort of legitimacy, that they should be listened to. Very very very hard. But participating won't make it easier to get rid of or calm her down. There will always be another demand right after you comply. It's never enough. OCD is insatiable.

[tpotter]

This is severe OCD behavior! Have you started on the PANDAS/PANS journey yet? Throat swab, blood tests, antibiotics etc, etc?

 

 

Yes, She has been on augmentin since Dec. The same severe behavior started then. She was diagnosed with pandas. After 5 days on abx, she was back to being her old sweet self. Over the past two months, when someone has been sick in the house her ocd behaviors have come back but only mildly. Last Saturday we saw it start to return again and each day it got worse. The past 3 have been unbearable. It is almost nonstop all day.

 

 

Sounds like she needs to be tested, get back on abx...immediately, and most of us do not stop with the abx, and you might also find that ibuprofin will help take off the edge, as it will help get the inflammation down in the basal ganglia.

[thenmama]

Chiming in to agree with what the other wise posters have stated: 1) test for strep, other infections, etc. and if she's on abx, ask about changing or adding to it for the short term and/or try some ibuprofen, or steroid course depending on your child's circumstances and how doc prefers to treat.

 

My son has gone into flares while on abx (he has a resistant strep and immune issues) and for both kids, without fail, if the OCD spikes, we find something underlying that's causing it. Our dd has also had some smaller scale spikes from exposure to others in our home who had strep. She generally doesn't go into the flaming exacerbation she'd experience if she herself had it, but the PANDAS definitely ramps up. So yes, yes, yes-- investigate the cause and treat medically first and foremost.

 

In the meantime, I would definitely start looking into CBT: ERP it has literally saved us (we spent years doing things the wrong way and had all become enslaved to the OCD) and while you're treating medically and looking into options for therapy maybe you could pick up or borrow a book or two on CBT/ERP to help you understand what it is, how it works, and how you might proceed w/ your child in the short term re: how to approach the rituals and your participation in them.

 

Here are a couple of books to give you an idea:

 

Talking Back to OCD

 

What to do when your child has OCD

 

That author also has a book for children that we've used:

 

Up and Down the Worry Hill

 

 

There are others, too-- if you look at the "customers also bought/viewed" fields on Amazon you'll see there's a bunch. Your library may even have some.

[smartyjones]

this may not be your daughter's issue but i wanted to mention to possibly help your thoughts witth it. . . certainly not always, but sometimes, a child can be doing these things to avoid something drastic -- like an illogical thought that harm or death will come to someone else. my ds7 had intense food avoidance issue for about a week while taking an antiviral. he drank just enough to keep him out of the ER -- he wouldn't allow us to eat the food he'd rejected. as he was 'coming out ' of it -- he made some comments that made me beleive he had some thoughts wrapped up that he/us would die from eatting the food -- furthermore,, that we deserved it b/c we shouldn't have eaten it in the first place. pretty harrowing thought for a 6 yr old.

my son generally presents 'just right' type of ocd, rather than complicated webs of thoughts. i'm not sure he would have been able to communicate or understand it all --just that no one could eat that food.

 

so, the controlling aspect can be maddening but the whole thing can be devastating.

 

i'd definitely recommend erp. in the short term, you could try a repeating technique from dr ross greene from The Exlosive Child. i know -- the issue is repeating but this may help. when she says you must repeat -- you say, "i do?! jsut like that?!" "with my arm up?" see if it can keep her stress level down and lead you to anything that you can discuss -- but keep in mind, attempts to talk her out of it or be logical in the midst, may only serve to dig her heels in. you have to try to fight it with her instead of fighting against her.

 

LLM -- whatt do you mean CBT is better for other anxiety?

Edited February 19, 2012 by smartyjones

[LNN]

Smarty - I meant that, in my understanding, CBT is really helpful for things like general anxiety disorder or anxiety other than OCD. But that OCD thoughts, which are generally driven by an irrational fear of harm to self or others and have a compulsion, is best disarmed with the specific techniques used in ERP.

 

In ERP, you have tools like "do the opposite" or "change it up", meaning you take a compulsion, say touching 4 times, and stroke instead of touch, or touch 3 times, or touch, tap, touch, or delay - steps to interfere with the compulsion while not resisting it entirely. The tools deal not only with the fears but also with the compulsions.

 

CBT, at least the way we use it, talks about catching yourself having a certain emotional/fearful response and using CBT techniques to change your thoughts/feelings/responses. But it doesn't assume there's a compulsion component or necessarily a fear of harm.

 

I've always thought of ERP as a subset of CBT, used specifically for OCD, where CBT is more for GAD or non-OCD anxiety. Not sure if I'm saying it well, but that's what I was trying to get at.

[HanHan]

Thank you all for your responses. All the information has been so helpful. I do have a question about cbt and erp. I told the person we have been consulting with that we are interested in CBT for our dd8. She said she doesn't believe therapy is helpful except to work on anxiety management and trying to develop insight into something you have no control over could make the kids feel they are failing the therapist and parents. Has anyone felt this to be true? Thanks again for all comments.

 

 

this may not be your daughter's issue but i wanted to mention to possibly help your thoughts witth it. . . certainly not always, but sometimes, a child can be doing these things to avoid something drastic -- like an illogical thought that harm or death will come to someone else. my ds7 had intense food avoidance issue for about a week while taking an antiviral. he drank just enough to keep him out of the ER -- he wouldn't allow us to eat the food he'd rejected. as he was 'coming out ' of it -- he made some comments that made me beleive he had some thoughts wrapped up that he/us would die from eatting the food -- furthermore,, that we deserved it b/c we shouldn't have eaten it in the first place. pretty harrowing thought for a 6 yr old.

my son generally presents 'just right' type of ocd, rather than complicated webs of thoughts. i'm not sure he would have been able to communicate or understand it all --just that no one could eat that food.

 

so, the controlling aspect can be maddening but the whole thing can be devastating.

 

i'd definitely recommend erp. in the short term, you could try a repeating technique from dr ross greene from The Exlosive Child. i know -- the issue is repeating but this may help. when she says you must repeat -- you say, "i do?! jsut like that?!" "with my arm up?" see if it can keep her stress level down and lead you to anything that you can discuss -- but keep in mind, attempts to talk her out of it or be logical in the midst, may only serve to dig her heels in. you have to try to fight it with her instead of fighting against her.

 

LLM -- whatt do you mean CBT is better for other anxiety?

[smartyjones]

I am so torn between standing for an hour or more giving into all the repeating or having her explode for hours and go in circles. I can see her brain is so stuck though. She has to recreate from the start.

 

i think that you do sound like you need some help -- however, it's just like anything else, there is good and bad help. just b/c someone has their shingle out and has a ph.d doesn't mean they're good help, or good for your particular issue. we were fortunate that we found a behavioral therapist who initially diagnosed ds, fairly early on. however, she had no suggestions for effective coping strategies. we cycled through a few more psychs, ranging from useless to detrimental. i had had it with the profession in general. last fall, we found someone who is really a needle in a haystack -- she gets it and can offer suggesttions that actually work. the others i'd think, 'right, i know he should do that, but if he did, i wouldn't need to be sitting here!!'

 

i don't think your choice needs to be between giving in or having her explode. i know it seems like that now, but you can get into a program where you are working toward something and you won't feel it's such an either or situation.

perhpas you can contact the OCD Foundation for a referral.

i found a lot of help from the website anxietybc.com

good luck.