PANDAS for dummies

[GraceUnderPressure]

I need to share with our family & close friends what PANDAS/PITAND is - they have questions. But they do not have an understanding of medical lingo or a lot of time for reading so I want to give them something succinct & easy to understand. Before I spend time that I don't have on this, does something like that already exist somewhere out there?

[thereishope]

Well, how brief do you want? You could say in simpler terms, "My child has PANDAS which is like RF (Rheumatic Fever) of the brain. Instead of the heart being affected by strep, his brain is and that causes his ________". At that point, those who are truly interested in learning more will ask you questions.

 

There's also the PANDAS Fact Sheet you can abbreviate and edit down for them

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

[airial95]

I explain it similar to Vickie, always making sure I explain it's like RF but instead of attacking the heart, it attacks the brain. I don't even mention any of the symptoms until after I explain that.

 

I found by opening with that statement, I get far less of the "boys will be boys", "bad parenting", etc... It seems that if you open up by this comparison (everyone understands the gravity of RF - and when you apply that concept to the brain, it seems less "frivolous" I guess) people don't look at the list of symptoms as being mental anymore.

[Kayanne]

Yes, I agree. RF of the Brain seems to be what most people respond positively to. Also, like Vicki said, those who want to know more will ask.

 

Good luck.

[EAMom]

This is a pretty good article:

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

[SarahJane]

I also use RF of the brain & then how this physical illness causes mental illness symptoms. Isn't is a sad situation when we explain it this way and people with no medical background get the gravity of the situation...and basically FREAK OUT when you explain it to them with the symptoms. And these are people that have never heard of it before...that makes it even more scary. And you do get to usually throw in how you had to basically self-diagnose since the doctors didn't help you. BUT when you explain it to a DOCTOR who knows the ins & outs of what strep can do to a body (and should know more than we do!), gives us the crazy parent treatment.

 

Sorry...I know that wasn't the question. But the abx treatment of RF is standard but we get grief. Strep is strep. Grrr.

[VickyLH]

I need to share with our family & close friends what PANDAS/PITAND is - they have questions. But they do not have an understanding of medical lingo or a lot of time for reading so I want to give them something succinct & easy to understand. Before I spend time that I don't have on this, does something like that already exist somewhere out there?

 

I just sent this talk radio interview with Dr. K to my sister last night and she found it very eye opening. It's a little long, but Dr. K does a great job giving an overview.

 

Here's the link:

 

http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=43934

 

My husband and I found it extremely helpful as well. It's long (55 minutes), but there's a lot of great info in the first 30 minutes if their attention spans aren't quite that long. ;-)

 

-Vicky

[Guest pandas16]

I usually say that I have an autoimmune disease in relationship to strep throat. I explain that when I get strep, my body produces antibodies to fight strep and antibodies against my brain. These anti-bodies against my brain can severely affect my ability to function until I can get a treatment to calm my immune system.

[GraceUnderPressure]

All good! Esp the Fact sheet! Thank you! I'll try the RF analogy - not sure if they really know what that is, but I was reminded that since my oldest sister suffers from MS, that could probably work as an analogy as well (ie. "it's like MS, but instead of attacking the myelin the immune system is attacking a part of the brain called the basal ganglia")?