Consolidated Chart

[T_Mom]

I vote for the chart--We would send in, great idea!

TMom

[bronxmom2]

I think it's a great idea.

 

I am especially interested in how anti-lyso, anti-tub, and anti d1 and d2 compare with symptoms and the efficacy of treatments.

[matis_mom]

Re the 'History' thread, you coud copy and past from other places that you described certain things (i.e. child's past history of symptoms, test results and comments, etc.) if you don't feel like re-typing that info. if its already somewhere else, just copy and paste to your own history box.

 

as far as the chart goes, there must be someone here who has an administrative background and is savy at spreadsheets?

 

Isabel, that was great what you posted, so if anyone wants to follow that format, it looks good to me. just so it doesn't get buried, Isabel, could you edit the subtitle to say " reference file of info on each member" or something like that so people know what it is about? .... just remember, no discussionon that thread, if you have a question, try to get it to them somewhere else. if its something that might benefit all of us, try to do it on the board.

I can't seem to be able to change the title or subtitle... Maybe we could move it up to "useful threads"? I have no idea how to do that...

[Kayanne]

Faith,

 

I believe thay your idea of tracking history is very good, but I think Buster's chart is really just a summary of the Cunningham test results with a couple of other keys bits of info--we are really talking about two different things.

 

I do have an idea regarding getting "history" info about everyone's children.

 

First, It seems that a lot of info gets posted repeatedly...etc...check everyone in the house for strep, higher and longer doses of abx, what to ask your dr, pen and amox can't reach intracellular strep.....

 

So maybe someone would be willing to write a post titled, "What to do if you think you child has PANDAS"--have it pinned up top. Put in the top of it not to add discussion to the thread--pm the member who posts it if there should be a change made.

 

We should add---"Fill out your personal profile with as much information as you feel comfortable. It would be really helpful if you could add a general location of where you live, and under Your Interests in the profile, please give a brief description of your child's history."

 

When a new member posts requesting info, we can add whatever we like to their thread, but also post a quick link to the one pinned up top.

 

I know that I go to member's profiles all the time to look for previous posts and topics, and If we could just look to the left of the screen and see our kids' history there, It would be helpful....plus there is a 50,000 character limit, these would brief....(I don't know how I will keep it so short though...as anyone who reads my posts can attest to)

 

Other things to add to the pinned info would be to go to www.pandasnetwork.org and contact them, definately info about the cunningham test, a link to the article that EAMom always posts about intracellual strep, possibly a link to Swedo's talks.

 

Okay....so is this too complicated? I just think that scrolling through a thread with everyones childrens' history would take me too long...if we could just go to the member's profile and see it right there, it would be more efficient.

 

BTW, I am willing to write the post, and have other members check it before it gets posted...or I will defer to someone else...either way works for me.

 

~Karen

[faith]

kayanne,

that's good too. do you mean they'd put their history on their profile? just to clarify, if it was done on a thread, each member would put all their info in ONE post, and edit it as they go along, not add other posts, their history and protocol and whaever info would all stay there in the one bos. Having this would help anyone who is interested in a particular poster's story for whatever reason, could just go there and get the scoop on them right away. see, we're not all on the same course, some are just starting out, some are seasoned in all the treatments, so having that info helps people who are looking for certain info, like for instance if they are about to go for PEX, they might want to track others experience, etc. you don't have to read everyones profile, just use it as a reference. did you see the one that mati's mom started, titled "health history", I think having all info in one box like that is good. I don't know.

 

I don't know if I'm conveying this right. could you clarify what your idea would look like.

 

I realize the chart is a different thing, I think both would be helpful, I feel both those should be done, one is kind of more casual and one is more professional.

 

Faith

[thereishope]

I like the "PANDAS for beginners" what to do list. Or frequently asked questions. I don't think many people refer to the pinned threads before asking things.

 

I think Chemar will pin the thread for you. I believe it's an administrative function.

[colleenrn]

Buster,

Thanks for taking the initiative to start this. I would definitely include my kids info!

 

Thanks,

 

Colleen

[TiredMom]

Thanks for doing this, Buster. I think it's a great idea and would add my dd's info - let me know what you need.

-Peggy