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Keep these questions and issues coming!! I think I will ask for some doctor opinions and see what they think, who might support it, etc. And you are right...we don't want to upset the apple cart and make things worse. Not officially saying it is pandas might be the only way some of us are getting help. Maybe until the docs agree there is nothing we can do. As far as how the codes work, I thought the insurance companies simply used them to identify each condition numerically - for easier record keeping, processing, etc. Maybe I should go look up the history of icd-9 codes now!

Awesome!!

Did some more poking on this subject and think this is something we can do!! It seems so basic that it is overlooked...if we get pandas it's own code then it seems insurance companies might have to start recognizing it more. Check out these links http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm http://www.healthcareitnews.com/blog/cms-cdc-call-icd-9-and-icd-10-code-freeze It looks like it is too late to submit for the September meeting, but it looks like the next one would be in March...so probably need to have the proposal submitted by Jan. And according to the second link, we better do it soon, or it will be harder to do it after October 2011. I need to look around some more and be more thorough, but I got so excited, and I wanted your thoughts. If we collect the stories for a book, they could go towards the proposal. So is this a pipe dream or what?

Off the topic... but I think a great medical school project would be for some students to follow this forum for a lengthy amount of time and try to get a grasp on what it is really like for the families and document some of the struggles, issues, etc. We'll call it "A Day in the Life of a Pandas Family." Anybody got an in with a medical school? Wouldn't that be lucky?!!

Awesome!!

Good Luck Trudy!! Sending good vibes, thoughts and prayers, whatever I can to help get you through this day!! Stay strong!! We are all with you!! Sarah

That code sounds like what they used for our pex. We have BC/BS federal, we should have talked more about that at the conference. Since they are so determined to use the NIMH guidelines, is there a way to get in writing someone saying there guidelines aren't up to date. Or did you already go that route? Didn't we all email the NIMH a few months ago at the personal request of someone official stating it wasn't accurate and needed to be changed? (Dr. Swedo, I'm guessing in May after autism conference) Was that request in writing or is it possibly on a video from the conference. Hmmmm..... We need a ICD-9 code. I think that would be a step in the right direction. Last time I looked this up...the Center for Disease Control organizes this, and every August they review the current codes, and makes changes, admissions, etc. How do we get on there list to be reviewed? Guess I will go google it again!! Sarah

Forgive me I having trouble adjusting to the new look, and getting this to bump!!

Oh, and I think the collection of stories is an excellent idea, and I would be willing to write ours down too!!

Warren Buffet's sister lives in my small city, and is always donating. Thanks to her we have a city pool, and she has made it free to all city members for the past 3 years. My local paper should be doing an article on pandas soon, just waiting on there schedule. I've given them the contacts, waiting on the reporter to have time. She will definitely see the article, but in the meantime I can see what I can figure out!!

Well, we are in the 4th week of July, so we were aiming to meet again Sat. 7/24. This time at 11:00 at the Olive Garden at Potomac Mills. A lot of us met last week at the OCD conference, and it was great! So if you didn't get enough pandas last week, and you have no plans let's meet again. Olive Garden/Potomac Mills 14405 Gideon Drive Woodbridge, VA 22193 And if not this month, plan for August 28 at 11:00 at Olive Garden again!! I'm sure it will be the fall before we can really get going. And remember we might be able to break off into smaller more local groups once we get going! I don't want the drive to scare anyone! This is just the starting point!! Thanks, Sarah Email me if you haven't already. (and put your username in the subject, I want to make sure I have everything straight in my head ) Sarah_Johnst@yahoo.com

I'll be there too!!

Understand the mixed feelings, having the same mixed feelings for you and myself. Just figuring out my non-pandas is probably pandas. Got her scores last week, 142, not too high, but high enough. I like how you put it...proactive and reactive. Trying to heal the "sick", and figure out what to do with the "not" so sick one. At least we are pointing in the right direction...I guess.

Same here...we got CamK last week, after 2 weeks, still waiting on others.

No advice to offer, just sending you good thoughts!! Hope you all find some relief soon!! Sarah

I don't think I would go, but I know it is a tough call. Nice of your friends to warn you!! Sarah

On it!! And, yes, I think you should go have that bonfire!!

I've been kind of wondering about this too...just got my non-pandas dd's CamKII score back...142. If I am reading it correctly, it falls in pandas range also. Am I right? In fact it is only 8 points below my ds10 during extreme exacerbation. Not too many symptoms, just little things I can put together with 20/20 hindsight, and the only over the top symptom that causes problems and seems abnormal on occassion is irritability, and defiance. It also seemed to increase with my son's impetigo. So add that to the familial aspect and I guess we will see. We see Dr. L for her in August so I guess in the meantime I'll get my ped. to run all those tests mentioned. It never stops does it? Sarah

Thank you so much Kelly and Vickie!! And thank your families for us!! What a wonderful uniting force you guys are!! Sarah

Almost official...looks like I have another panda bear in the house!! Cam Kinase came yesterday...she is 142. Fortunately, no severe life-altering symptoms yet, just extreme emotions on occasion! Hopefully, we can get a handle on things before she gets too bad! We are up to 2 siblings now, and very likely 2 cousins too!!

Thank you for sharing this story!! It is so wonderful to hear!! Sarah

So happy to hear things are going so well!! Sarah

Thank you so much Kelly and Vickie!! Words can not begin to express my gratitude for all your time and effort!! You have done so much for our kids!! Sarah

Yep, sounds like my pandas boy, 10, in constant shock mode!!

Kara...that is how I feel...we are gonna win, so maybe I feel strong enough to volunteer now!!