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new article on PANS from Stanford Medicine


EAMom

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http://stanmed.stanford.edu/2014fall/brain-attack.html

 

Here's a bit:

 

"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.

“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.

“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

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I'm reading this article now, but one of the things I like about it is the run-through the parents go through with trying to attack this with behavioral interventions (ie trying to be "better parents") and how futile that is when the brain is inflamed. In other words, rewards charts may not be so effective when the child's brain is on fire,

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and what if the case is not as sever as described here? is that not PANS then?

"so many other problems that the child can barely function." -- barely function may mean not being able to go to school, not leaving room, etc. most kids on this forum, as far as I know, can function in some way.

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@pr40
that is a good question. I always wonder what would have happened if my dd had not had her tooth extractions...if her symptoms would have ramped up quickly enough for her to become full-blown (anorexia, bipolar behavior, severe OCD). Before the extractions (but after her "fever" which we later figured out was strep onset), she had become "difficult" with lots of tantrums, some food restriction...I always wonder if we would have ever diagnosed her if things hadn't happened the way they did, if she would have progressed to the same level of severity (but more slowly) or if she would have been stuck (and undiagnosed) with mid-grade symptoms.

Edited by eamom
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I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....

 

I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

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The traction this disease is getting is so promising....

 

It was mentioned last Spring at the PANS conference in SanFrancisco (which I highly encourage any of you to attend in the future...wherever it will be held), but I am really looking forward to the article that is mentioned in this article as well: Journal of Child and Adolescent Psychopharmacology is publishing an October 2014...

 

It should be coming out any minute....right? Or is it out?

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I strongly feel that the problem all along has been labeling this disorder PANDAS and attributing everything to strep. Doctors who did consider PANDAS would give a strep test, it would come back negative and it was, "Oh, well that's not it." That's what happened with our daughter. It seems that ever since PANS has been emphasized, the acceptance, understanding, and treatment has progressed... and we're just beginning! I am hopeful!!!!!

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Yes, I agree maryaw...also, the "strep test" was often just an ASO...no cultures or other titers. And doctors don't know to look for rising titers or that titers don't rise in many kids. Or the ASO gets drawn at the wrong time.

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and what if the case is not as sever as described here? is that not PANS then?

"so many other problems that the child can barely function." -- barely function may mean not being able to go to school, not leaving room, etc. most kids on this forum, as far as I know, can function in some way.

There are day we don't leave the house. Shower and teeth brush are big success days for us. Then there are times that he is relatively sticking to a routine . But No school!!! I can not believe that so many children make it to school. Even our best days could not pull that off. My Ds plays video games plays with friends a bit and goes to Karate when not too tired and for school we watch educational videos as well with oral testing after. Last year he was an advanced straight A student at a private school. We last a few weeks with a schedule and then he starts to fall apart again. Picks up bad behavior and habits and it all begins again!!! We cant seem to get too long of a run without falling off the cliff. Lymes/Bart treatment!

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We are strictly PANS...and I agree that the PANDAS and the strep association was a major roadblock for us.

 

This Saturday, 10/25, marks the one year "anniversary" since the storm hit our family. Many, MANY dark months that are in our rear view mirror now (one can only hope). Though I can't seem to shake the dark cloud of "what if" and putting my DS under the microscope wondering if the next flare is starting, or just around the corner.

 

For the moment I try to put the fear out of my mind and relish (TRULY relish) the blessing that is my healthy 12yo son at school today (I hear you hopeinhim, our DS couldn't attend MONTHS of this past school year....). We have bumps and hiccups, but know that if it really hits again we know what worked for us. I hope and pray for the same to each and every single one of you as well.

 

Warriors.

 

Kristi

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