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Who's obsessed here?


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Last night I was crying about my son, the difficult day we'd had, the panic I was feeling, the fact that no one else believes there is something wrong with his brain that has to be treated...

 

My husband, in a rage, suddenly shouted, "YOU ARE OBSESSED WITH THIS CHILD!"

 

I have to admit, he had something there.

 

I mean... I have more than a bit of OCD myself, and this frustrating PANDAS situation is the perfect funnel for it.

 

Does anyone else feel... obsessed with their children?

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Ditto! I'm obsessed with reading, researching, trying to find somebody local who can / will help. Feels like our sweet, wonderful kid is just slipping away from us and has no quality of life. I know worrying all the time is a waste of energy... but I really struggle to focus my mind on anything else these days.

 

My parents think I have a "martyr complex." I don't think that's true: just want to find a way to help my son and for this whole, nasty nightmare to end!!! But they doubtless have a point that my wife and I need to figure out how to pace ourselves and strike a better balance to keep from burning out. If we're zombies, we can't help anybody.

 

Easier said than done, eh? :blink:

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Yes, obsessed! It's my job to give them a chance for a happy, healthy life where they can have a chance to be a kid. How can we not be obsessed?

 

Last week I was feeling much like what you describe. I was so deeply into it I was asking my Mom, "Am I just crazy? Maybe nothing is wrong. Maybe it's me". This week, things seem much better. Hang in there.....

 

HUGS!

 

Susan

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Yes, but at what point does the obsession undermine our efforts to help our children?

 

It's sometimes hard for me to stay focussed on the goal-- getting someone to treat my son-- because my own mental health issues start popping up when I am under so much stress.

 

Today I had a panic attack in a Fed Ex store because they refused to ship the little styrofoam cooler containing the serum samples I was trying to return for Cunningham's study. I was actually hyperventilating. In front of my children. The manager picked up the phone and I think she was calling 911.

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Obsessed isn't even the word. You said you have slight OCD. I can now see it in me. I ask assurance questions of my husband over and over. Is he going to be ok? Will he catch strep at school? Why didn't I do this? Should I have done that? It goes on and on. I feel I am paralyzed by fear and I am filled with anger at the same time. I cannot get anyone to back up putting him on propholactic antibiotics no matter how much I reason, beg, give them info, annoy,etc. I am going to be sending my child into a classroom of kindergarteners. I feel I am sending him into a pool of sharks.This is gonna be a long life.

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I totally sympathize with you.

 

I feel like every free ounce of my energy goes into reading this forum and the other research on PANDAS...I worry that I am going to miss something critical because I don't have a science/medical background and there is SO much that I just don't understand...I feel like I owe it to my daughter to know everything that I possibly can about this!

 

My daughter is doing great right now, but I still don't have a long-term approach pegged down...I worry about the other aspects of this disorder....symptom recurrance with viruses...and vaccines...and my other 3 kids....

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Guest asaxon
Last night I was crying about my son, the difficult day we'd had, the panic I was feeling, the fact that no one else believes there is something wrong with his brain that has to be treated...

 

My husband, in a rage, suddenly shouted, "YOU ARE OBSESSED WITH THIS CHILD!"

 

I have to admit, he had something there.

 

I mean... I have more than a bit of OCD myself, and this frustrating PANDAS situation is the perfect funnel for it.

 

Does anyone else feel... obsessed with their children?

To compare a parent's overwhelming concern for her child who has debilitating OCD with OCD is silly and offensive. Raising kids is hard, and parents need to give it their all just to give their kids--even those who are not struck with a crippling and poorly-understood disease--a fighting chance of growing up healthy and happy. Good parents buy into being more or less preoccupied with their children when they decide to have children--otherwise, they should buy a fish instead, right? Obsessions, as they pertain to the disease OCD, are by definition irrational preoccupations. Is your concern for your child and your effort to cure him irrational or disproportionate to the severity of the problem?

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Last night I was crying about my son, the difficult day we'd had, the panic I was feeling, the fact that no one else believes there is something wrong with his brain that has to be treated...

 

My husband, in a rage, suddenly shouted, "YOU ARE OBSESSED WITH THIS CHILD!"

 

I have to admit, he had something there.

 

I mean... I have more than a bit of OCD myself, and this frustrating PANDAS situation is the perfect funnel for it.

 

Does anyone else feel... obsessed with their children?

To compare a parent's overwhelming concern for her child who has debilitating OCD with OCD is silly and offensive. Raising kids is hard, and parents need to give it their all just to give their kids--even those who are not struck with a crippling and poorly-understood disease--a fighting chance of growing up healthy and happy. Good parents buy into being more or less preoccupied with their children when they decide to have children--otherwise, they should buy a fish instead, right? Obsessions, as they pertain to the disease OCD, are by definition irrational preoccupations. Is your concern for your child and your effort to cure him irrational or disproportionate to the severity of the problem?

 

 

asaxon, honestly, I don't always know-- is it irrational? I know my family (including my husband) think I am looking for excuses for a difficult child, and this adds the weight of doubt to the whole ordeal. (My mother's attitude is something like, "if you think there's a problem, then you'll create a problem, so believe there's no problem and everything will be ok.") (Meanwhile I suffered acute psychological pain for 20 years while she believed there was no problem.) One thing I'm asking about is... there's a genetic component to this that might make it harder for some of us. Also, my son (and others here it seems) does not present with classic OCD, fearfulness, anxiety... it is more an obsessive, intense attachment to objects and ideas.

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Guest asaxon
(My mother's attitude is something like, "if you think there's a problem, then you'll create a problem, so believe there's no problem and everything will be ok.") (Meanwhile I suffered acute psychological pain for 20 years while she believed there was no problem.)

I think that there is consensus that OCD probably has a genetic component, but so what? Would you have preferred your mom to do what she she did (ignore your suffering) or would you have preferred her to do for you what you are trying to do for your child (desperately seek treatment or a cure)? Sounds like you sort of answered your own question!

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I read your post and thought about March last year when we were calling our pediatrician because our 7 year old wasn't eating. Our dd was freaking out, thinking she was fat, measuring her arms, looking at herself in the mirror, obsessed with scales. "Just be firmer" our doctor said. We actually tried that -- you'll do anything when your kid's not eating -- surely doctors know. Nothing. We've raised our dd for 7 years and never had an issue.

 

Something was desparately wrong. We went to the pediatrician's office. Our daughter had lost 12% in body weight in 10 days.

 

Right there, in the middle of the exam room, she freaked out. I don't mean a little bit, I mean way off the charts crazy. She was having a full-out psychotic episode with suicidal declarations, "I need to be killed, please kill me, I want to die." It was really, really scary. She was absolutely still, standing, screaming at the top of her lungs, eyes fully dilated, totally psychotic. The doctor came in, tried for a minute to calm her down, and said 'you'll have to go, this is disturbing other patients' -- I couldn't believe it. I still can't.

 

Here's your patient you idiot. This is NOT normal. But they don't deal with mental illness ....

 

I then started calling every psychiatrist I could find -- can you treat a 7 year old with rapid sudden severe eating disorder, measurement rituals, obsessive questioning about food,... I still can't believe the horror of the time. On my 20th call, I reached a psychiatrist who ask (I'm not kidding) did I have a strep test done -- what?

 

I googled 'strep anorexia nervosa' and out popped PANDAS. We were able to reach another pediatrician who got us a bed at the Lucille Packard Children's Hospital Eating Disorders Clinic saying it was the fastest way to get blood work and she would be safe there. We got there (long story) and asked for a strep test -- they thought now we were nuts. The doctors said she had full on OCD and Anorexia Nervosa, but they did humor us and take a culture. Two days later, they were advising us about long term psychiatric care, her culture came back positive (as had her sister's) and everyone was, well, surprised. They started augmentin. I called my wife 18 hours later when "our daughter came back". I'm not kidding, it was as if boom, there she was again. Not all the way back, but recognizable. I truly, truly understand how in the 18th century you'd think she had been possessed.

 

Even then we got "we're an evidence based hospital and there isn't enough evidence to support PANDAS" ... unbelievable.

 

It is a lonely fight and all I can say is trust your gut (and get some tests to back you up).

 

Regards,

 

Buster

 

 

 

 

Last night I was crying about my son, the difficult day we'd had, the panic I was feeling, the fact that no one else believes there is something wrong with his brain that has to be treated...

 

My husband, in a rage, suddenly shouted, "YOU ARE OBSESSED WITH THIS CHILD!"

 

I have to admit, he had something there.

 

I mean... I have more than a bit of OCD myself, and this frustrating PANDAS situation is the perfect funnel for it.

 

Does anyone else feel... obsessed with their children?

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Even then we got "we're an evidence based hospital and there isn't enough evidence to support PANDAS" ... unbelievable.

 

LPCH's attitide was so dismissive...even though every psychiatrist/doctor we talked to said it was pretty much unheard of for a 7-year-old to have Anorexia Nervosa. Nobody offered us a more plausible explanation for dd's acute onset (over 2mo.) of Anorexia, severe OCD, depression, and bipolar-type behavior.

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Right there, in the middle of the exam room, she freaked out. I don't mean a little bit, I mean way off the charts crazy. She was having a full-out psychotic episode with suicidal declarations, "I need to be killed, please kill me, I want to die." It was really, really scary. She was absolutely still, standing, screaming at the top of her lungs, eyes fully dilated, totally psychotic. The doctor came in, tried for a minute to calm her down, and said 'you'll have to go, this is disturbing other patients' -- I couldn't believe it. I still can't.

 

My heart is breaking for you guys today and for all of us really who have to go through all this with little support.

 

susan

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Yes I am So....Obsessed that is all I do, I can't think of anything else. And I cry all the time!

I know, it is not good for my grandson to see me like this. I feel so helpless.

We all just what to help our kids get better, people that are not around our kids alot don't seem to understand what we are talking about.

I know my grandson can be almost ok for a day and then..he just starts jerking out of his skin.

And then I start going over the whole day trying to remember what he ate or did.

Yes I'm Obessed.

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