How to.......

[trademein]

How do I quickly and simply tell the Aunt that we see once a year about PANDAS? Holidays are here and people will be asking what has happened to DD9 since last year. Oh love the long distant family.....Since this is my first Holiday with this I don't know what to tell them in a quick way. Any ideas?

[SarahJane]

One of the best explanations that we use & people at least nod when they hear it whether they understand it or not is to compare PANDAS to RF. How RF, which is also strep, attacks the heart, but with PANDAS that the strep attacks the brain & can cause a whole list of mental illness, social/emotional, & movement symptoms due to the area affected. There's no cure but there are treatments...one being abx just like RF. Then go on to complain about how nobody understands the toll this takes on your family and the political nature of the disorder and how there's not enough funding for research (and give them all the options of where they can donate) and basically go on & on & on...IN YOUR HEAD...because once you've talked for 2-3 minutes their eyes will have glazed over & they'll be ready to move on to another topic.

 

But seriously, the comparison to RF does usually make sense to people. I usually say something about what a nasty bug strep is. One time I was telling a clerk in a fabric store about PANDAS, and she knew someone who got a strep skin infection that she didn't get treated & ended up having her hands & feet amputated, was in her 40's with 2 small children. YOWZA! (RELAX PANDAS Parents! We are treating our kids! Don't start worrying about all that!) You'd be surprised the stories people have about streop. My mom-in-law got a call from one of her friends whose daughter had SC back in the 60s & she was telling her how there was no way she could know what our family was going thru. Know who dx'd her daughter with SC back then?...a psychiatrist!...actually asked when her daughter had had last had strep. Put her on long-term abx. That mom thought we'd come a long way since we had the IVIG scheduled. I was thinking how far we'd fallen behind since now the SSRIs & other drugs trump abx for illness.

 

Good luck with your holiday gatherings!!!

[laure]

I have referred people to the Saving Sammy video on youtube. Seems to do the trick.

[KaraM]

If you want it really short - but not necessarily simple (a little technical with the medical language), try this page from PRN

 

http://www.pandasresourcenetwork.org/about-pandas.html

 

Another thought is the Saving Sammy "Got Strep" postcard or flyer. Email me if you have not seen that and I can email you the flyer. You can get the postcards from Beth Maloney's organization.

 

Finally, I'll try to dig this up in the posts, but a couple of members here have written magazine or newspaper articles, including Buster and LLM. These would be a little longer than the above, but they will at least tell a story that is probably similar to your child's in some way, shape or form.

 

I guess I'm thinking you could say to her privately that she may notice some changes in your child's behavior and that she has been diagnosed with a relatively newly recognzied disorder called PANDAS. Perhaps you could give her one of these pieces and just say something about how your time together with her over the holidays is short and you (don't want to/don't have the time to) spend a lot of time talking about it, but that this might explain it a little. Than just ask for her understanding that the behaviors are really our of your child's control at this point and that this has all been extremely hard on your family.

 

My guess is the hard part will be keeping the conversation limited. If your aunt cares, she will probably want to know more.

 

Since there have been a few high publicity cases, your aunt may have even heard of it by this point....

Kara