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How PANDAS should be described in 5 years


LNN

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A friend sent this link to me while she was researching reactive arthritis

http://www.printo.it/pediatric-rheumatolog...mation/UK/9.htm

 

It is factual, based on research and clinical evidence. There are phrases like "mandatory prophylaxis" and there's no hint of controversy. It's something every 1st year med student should know. Mentally replace RF with PANDAS and when this is published, I'll know we've succeeded.

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That is a great article. I printed it out and plan to present it along with other "evidence" to our pediatrician on Thursday. He's been a little on the fence about the long term abx treatment. If we know other types of auto-immune diseases are caused by strep anti-bodies, and we know that the key to helping these kids heal, why is there such a controversy regarding PANDAS? I just don't get it.

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A friend sent this link to me while she was researching reactive arthritis

http://www.printo.it/pediatric-rheumatolog...mation/UK/9.htm

 

It is factual, based on research and clinical evidence. There are phrases like "mandatory prophylaxis" and there's no hint of controversy. It's something every 1st year med student should know. Mentally replace RF with PANDAS and when this is published, I'll know we've succeeded.

 

 

When I read stuff like that knowing that doctors are likely familiar with it, it makes me even angrier for all the people out there who have come up against a brick wall with doctors wrt PANDAS. How is it possible that they can't see that strep or other infectious agents could cause they symptoms our children are dealing with? I just don't get it.

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A friend sent this link to me while she was researching reactive arthritis

http://www.printo.it/pediatric-rheumatolog...mation/UK/9.htm

 

It is factual, based on research and clinical evidence. There are phrases like "mandatory prophylaxis" and there's no hint of controversy. It's something every 1st year med student should know. Mentally replace RF with PANDAS and when this is published, I'll know we've succeeded.

Great article! I find it specially interesting because my son presents the joint pains/swelling and the pediatricians totally missed it, grrrrr, I'm still having trouble letting go of that one... breath in, breath out....

Thank God the heart checks out OK, but my heart sank when the Dr. explained the whole picture and told us to go see the cardiologist, we were so worried... By God's grace we called and they had a cancellation the very next day (otherwise we would have had to wait a month!), what a relief!!! But still, it's always in the back of my mind, as he does actually have a murmur.

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Yeah, our son's symptoms started with joint pain, muscle weakness, difficulty walking, then seizure-like episodes of adventitious movements. He was eventually diagnosed by a wonderful local DAN doc with acute rheumatic fever / Sydenham's chorea (later changed to PANDAS). We were scared to death of heart damage, too, because our son complained of chest pain and racing pulse, but the echo turned out fine.

 

And - in the very early days of this - my wife actually suggested rheumatic fever to our (former) family doc because the WebMD online symptom checker suggested it. He just blew her off, saying "that's so rare, nobody gets that anymore." Sigh....

 

Even if it's an established, uncontroversial diagnosis, it often still gets ignored.

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What fascinated me about this article was how similar it was to our stories - the joint/muscle pain, the trouble walking, the effectiveness of NSAIDS, the racing heart.

My son too complained of chest pain, racing heart. But of course by the time you get to the doctor's office, it's gone and you get "that look" like you're neurotic. We too had the heart checked out with echocardiogram and there was no damage. But you read this article and you know it was covered in med school and the symptoms can be so similar, and yet you get sent away with a shrug because they're looking at the wrong organ.

 

What I loved about this article was how matter of fact it was about the very things that supposedly make PANDAS controversial. How it would be absurd to do anything but prophylactic abx, how essential it is to be aggressive to prevent long term damage. And all I could think was - is it because they can look inside the heart with an echocardiogram and see the damage, but they can't see inside the brain to look for inflammation? Would all this controversy go away if doctors could "see" it for themselves? Does our fund raising need to go toward brain imaging technology? Would they believe us then?

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