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Advice on 12 year old's denial


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My 12 year old dd was dx with PANDAS in March of this year and is continuing on abx under the care of Dr. T. Her second round of lab work shows that she is improving but he is continuing for the next few weeks anyway on abx. He recommended CBT for her OCD but we are really struggling with her total denial of her symptoms. She is better in so many ways but still locked into O-C behaviors that interfere with her daily life. She has never really been herself in the last almost 2 years and it is frustrating to not see more progress after finally getting a dx and treatment. We consulted a cbt therapist and she could not breakthrough Taylor's denial. Her symptoms have actually worsened after my attempts to talk directly about OCD. Although, Taylor has admitted she "used" to have O-C "really bad." I have heard on the forum of the intensive outpt. OCD programs in Maine and FlA. and wonder if they would be better able to help Tayor confront her O-C head-on. We are all suffering and I don't know how to help Taylor with this. Any suggestions would be greatly appreciated.

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Hhhmm.

 

We have dealt with lots of ocd- but not too much denial. Sure denial on the surface, but for the most part we have been able to break that down.

 

I will say, it is VERY hard to find a good therapist.

 

Where do you live?

 

We are at USF now for intense treatment. I am happy with it, happy to be able to be at therapy daily, and happy it is covered by insurance.

 

I used to wonder/ worry/ find talking about the ocd might make it worse- but the reality is- it needs to be constantly talked about.

 

I would start by giving your daughter the workbook- what to do when your brain gets stuck- child's guide for overcoming ocd- after you read it. For me, and my kids, it was THE BEST thing we have done. It is the clearest, easiest description of how to fight ocd.

 

I would start by NOT pushing too hard. Explain pandas- that it is not her fault, that an illness has caused this, but that luckily with medical treatment, and some hard work, SHE can get her life back, and live it the way SHE wants. As you go through this, you might tell her: this (therapy, fighting the ocd) has to be done. It can be done now (and she can get it over with), it can be done next week, it can be done next year, or it can be done when she is 20 (and it will be much harder then). Reassure her that you fight the ocd in BABY steps, and that you will be with her every step of the way.

 

Meg's Mom is a great resource- research her posts. Hopefully she will respond....

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Hhhmm.

 

We have dealt with lots of ocd- but not too much denial. Sure denial on the surface, but for the most part we have been able to break that down.

 

I will say, it is VERY hard to find a good therapist.

 

Where do you live?

 

We are at USF now for intense treatment. I am happy with it, happy to be able to be at therapy daily, and happy it is covered by insurance.

 

I used to wonder/ worry/ find talking about the ocd might make it worse- but the reality is- it needs to be constantly talked about.

 

I would start by giving your daughter the workbook- what to do when your brain gets stuck- child's guide for overcoming ocd- after you read it. For me, and my kids, it was THE BEST thing we have done. It is the clearest, easiest description of how to fight ocd.

 

I would start by NOT pushing too hard. Explain pandas- that it is not her fault, that an illness has caused this, but that luckily with medical treatment, and some hard work, SHE can get her life back, and live it the way SHE wants. As you go through this, you might tell her: this (therapy, fighting the ocd) has to be done. It can be done now (and she can get it over with), it can be done next week, it can be done next year, or it can be done when she is 20 (and it will be much harder then). Reassure her that you fight the ocd in BABY steps, and that you will be with her every step of the way.

 

Meg's Mom is a great resource- research her posts. Hopefully she will respond....

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we are really struggling with her total denial of her symptoms. She is better in so many ways but still locked into O-C behaviors that interfere with her daily life.

 

this may not be your issues but your post makes me think of it. . .

 

one of the things that i remember dr. l saying at the OCD conference last year -- and please, this is my memory of what she said, so could certainly be off -- some of the kids have thoughts so bad and/or frightening that they will never reveal what they are.

 

shortly after that, ds7 had what we now believe to be a severe herx-like reaction to an anti-viral resulting in severe contamination issues involving food. luckily, it was short term. through some insights as he was pulling out of it, i believe it was somehow wrapped up in that he or the person eating whatever would die from it (not too uncommon or unknown). however, i think added to that, was the belief that they would deserve such a fate b/c they did in fact, eat it. quite heart-wrenching to think of a 6 yr old having that thought -- about his family. what we saw, was wild tantrums often smacking 'contaminated' foods out of our hands or on the floor. i do honestly think, in his mind, it was wild, panicked attempts to protect us.

 

again, maybe not your issues, but could what you see as denial, be denial of some thoughts so horrific to her that she simply can't come to terms with them?

 

and, i'm so very sorry to say, that i agree with dcmom that finding a good therapist seems so very hard. perhaps an intensive center may have some answers.

 

good luck!

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My 12 year old dd was dx with PANDAS in March of this year and is continuing on abx under the care of Dr. T. Her second round of lab work shows that she is improving but he is continuing for the next few weeks anyway on abx. He recommended CBT for her OCD but we are really struggling with her total denial of her symptoms. She is better in so many ways but still locked into O-C behaviors that interfere with her daily life. She has never really been herself in the last almost 2 years and it is frustrating to not see more progress after finally getting a dx and treatment. We consulted a cbt therapist and she could not breakthrough Taylor's denial. Her symptoms have actually worsened after my attempts to talk directly about OCD. Although, Taylor has admitted she "used" to have O-C "really bad." I have heard on the forum of the intensive outpt. OCD programs in Maine and FlA. and wonder if they would be better able to help Tayor confront her O-C head-on. We are all suffering and I don't know how to help Taylor with this. Any suggestions would be greatly appreciated.

 

 

Just want to say, as someone in remission from PANDAS, your thoughts are so badly scrambled by the OCD sometimes that you don't know what's up or and what's down. What I mean is, it's very, very possible that it is PANDAS keeping her from being able to think logically, not actual "denial." So if it's still the disease keeping her from thinking straight, that may mean there is further infection/autoimmune stuff to uncover. If that's the case, CBT may not be any help whatsoever. At least that was the case for me. I had one CBT meeting after a couple months on antibiotics and I knew that what the therapist was asking of me would be impossible for the place my brain still was. So I decided I would hold off on that until my thought patterns got back in order enough to actually be able to accomplish anything with therapy (but in the end, after the right combination of antibiotics, I never ended up needing CBT). So anyway, my point is, the CBT may not be helpful if her brain (her physical brain, the inflamed basal ganglia, not her thoughts/mind) isn't able to think clearly enough to work with the therapy.

 

Best of luck...hope you find something that relieves this for you and your daughter!

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