Consolidated Chart

[Buster]

Hi folks,

 

What do you think about posting a consolidated chart of symptoms/test results. I've got a spreadsheet going of everyone's posting thus far and with a little encouragement, I'll put it up here. I've pulled the numbers from prior posts -- my only hesitation is that we're all going to be trying to find patterns in it, when truly the research isn't done and we still don't know (nor do the researchers know) what the numbers mean. Especially for new folks, it could make this seem more concrete than the stage of "exploration" we're all in.

 

Regards,

 

Buster

 

So far, I have chart data for:

• Buster
  
• EAMom
  
• WorriedDad
  
• michele
  
• mom_md
  
• peglem
  
• betty04
  
• iowamom
  
• sf-mom
  
• dut
  
• acdrobert
  
• ellen
  
• DCMOM
  
• colleenrn
  
• Bronxmom2
  
• monarchcat
  
• pixiesmommy
  
• meg's mom
  
• KeithandElizabeth
  
• Kayanne
  
• mama2alex
  

The format would look like:

 

username        | m/f  | age | onset | primary | report  | antibiotic |    SSRI (mg) |  CKII   |  anti-lyso | anti-tubulin | anti-d1 | anti-d2 |   comment

Buster 1          f        9     ?     OCD        4/6        250 azith    10  Prozac      183        1280       1000        8000        16000      no-ex
[/codeBOX]

Regards,

 

Buster

[bubbasmom]

I think posting a chart like that would be fantastic. HOWEVER, I don't know what everyone else is going through but with my son's rage and threats I haven't had time for a shower or to clean my flooded basement. i wouldn't have time to go through all of that. PANDAS consumes us. Every ounce of our being is centered around this. I haven't seen my mom for 2 1/2 months (she's 82) because I'm afraid to go out there with him in case he acts up. I haven't been out of arms reach of him since September 1st.

If you have the time (and energy) that would be awesome.

[peglem]

Buster, I love that idea! And thank you so much for pulling everyone's info! What does the "report" heading indicate? That would be a great resource to pull up when somebody posts about their child, so we don't have to keep asking for information that they've already given in various posts. Could we also show if/when the child has done PEX or IVIG?

[Buster]

Buster, I love that idea! And thank you so much for pulling everyone's info! What does the "report" heading indicate? That would be a great resource to pull up when somebody posts about their child, so we don't have to keep asking for information that they've already given in various posts. Could we also show if/when the child has done PEX or IVIG?

 

Happy to add the PEX/IVIG. I pulled the chart together primarily to avoid asking folks about stuff they've already posted -- and then thought it might be helpful to keep up to date.

 

My only real hesitations on posting (versus IM'ing and emailing) are

• that the table feature on this forum is REALLY terrible
  
• it may come across to some as more scientific than it is...
  
• I may have inaccuracies in the table
  

.

 

it's just a bunch of anecdotal info about what each of us have tried and what we're doing now -- but it really can't be treated as more than anecdotal.

 

Regards,

 

Buster

[Suzan]

I'm in! I don't see my name there so I can get you what data we have so far. I won't have time until next weekend since I will be out of town.

 

Susan

[thereishope]

My son only had positive throat cultures and antibiotics so I wouldn't be much help with adding info, sorry. But it's great idea!

 

Also, for the parts w/ meds, maybe consider adding how long they were on them for. Or maybe I should say at what time of exacerbation/recovery are these number taken from?Just to make sure the data is taken consistently.

[faith]

Buster,

now that you brought it up, I was thinking of starting a "history" thread where posters would have their own box to enter basically their whole story on. I know we all have so much interest in others stories and experience and it does get a little hard to keep all the info on each member in our heads. Each member could post their childs brief history, and other pertinent info, i.e. symptoms, what they've tried as far as abx and the experience, how long it took to see improvements, what doctors they've seen, basically everything that is talked about. then anytime they want to update that info, they would just go in and add to their post, not start a new one. Of course they could still start other threads or talk about this stuff elsewhere, but this would be just to add the data so its at least all in one place. kind of like a "file" on each for anyone who wants to enter the info.

 

I'm not sure exactly what your chart is about, is that just basically a quick reference for each poster's child? I'm guessing that would help in case anyone wants to know certain things about their protocol?

 

How about if we try it both ways and see what happens., I'm thinking this should be a sticky thread or something that won't get hidden if its not bumped up often.

 

Since I'm kind of new to this game, I have some info to give out, but you guys have way more. and of course as we go along, we all like to update and report different things that happen along the line. this would be just a "history" and fact box, no discusssion. any discussion would be on other threads. but this could get wacky too, because sometimes when I see interesting info, I might want to ask a question and then that opens up discussion between all of us, so really don't know if this is a good or bad thing. I guess if it is just a stick to the facts, very brief, for quick refereence, then at least we could refer to it when we are interested in a particular protocol or what ever thing we'd like to inquire about. and of course, as you said, eliminate the need to ask questions about things already answered. but again, its good to discuss the crap out of all this stuff, that's what we're here for.

 

what do you all think?

 

Faith

[faith]

like here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. dates would be helpful too.

 

poster name:

childs year of birth/present age:

brief history of symptoms/when they started

any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but positive culture?, immunology results, etc.

camk number (if done)

antibiotic use history:

doctor and what protocol they suggested:

other doctors that were helpful and why:

steroid trials and detailed experience:

special section on those persuing IVIG or PEX and what the details were:

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

Faith

[matis_mom]

like here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. dates would be helpful too.

 

poster name:

childs year of birth/present age:

brief history of symptoms/when they started

any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but positive culture?, immunology results, etc.

camk number (if done)

antibiotic use history:

doctor and what protocol they suggested:

other doctors that were helpful and why:

steroid trials and detailed experience:

special section on those persuing IVIG or PEX and what the details were:

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

Faith

I like this format better than the table. We could each just fill out as much as we can and then edit as we go (we could add at top a line titled "last update"). If they could all be under the same heading, then it would be easy to look up someone's history. The table would be good too, but it would be hard to put all that info on a grid and someone would have to spend precious time maintaining it. I'm going to go ahead and start a thread with it... Let's call it Health History or something like that. I actually have to do this to send along with our Cunningham samples (still waiting for the kit!)

 

Isabel

[thereishope]

Also, does the parent feel the child recovered from this PANDAS exacerbation? How long did full recovery take?

 

 

like here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. dates would be helpful too.

 

poster name:

childs year of birth/present age:

brief history of symptoms/when they started

any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but positive culture?, immunology results, etc.

camk number (if done)

antibiotic use history:

doctor and what protocol they suggested:

other doctors that were helpful and why:

steroid trials and detailed experience:

special section on those persuing IVIG or PEX and what the details were:

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

Faith

[Suzan]

like here are examples of some of the things that could help us out. each poster would have their own post in the thread with their info....anytime something changes or is added to the history, they would just come in and update it. dates would be helpful too.

 

poster name:

childs year of birth/present age:

brief history of symptoms/when they started

any previous diagnosis, i.e. autism, asbergers, pdd

PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.)

results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but positive culture?, immunology results, etc.

camk number (if done)

antibiotic use history:

doctor and what protocol they suggested:

other doctors that were helpful and why:

steroid trials and detailed experience:

special section on those persuing IVIG or PEX and what the details were:

Additional therapies sought:

Supplements used:

Meds used:

Any 'other' pertinent info:

 

(anything else anyone would like to add or have info on.)

 

I know having this info at my fingertips on each member would help me alot.

 

Faith

I like this format better than the table. We could each just fill out as much as we can and then edit as we go (we could add at top a line titled "last update"). If they could all be under the same heading, then it would be easy to look up someone's history. The table would be good too, but it would be hard to put all that info on a grid and someone would have to spend precious time maintaining it. I'm going to go ahead and start a thread with it... Let's call it Health History or something like that. I actually have to do this to send along with our Cunningham samples (still waiting for the kit!)

 

Isabel

 

I think this is great for submitting the data, very easy.... I also think a chart is necessary so you don't have to scroll through everyone to look for a trend. I LOVE data and I love to look for comparisons.

 

Susan

[peglem]

We should find out if there is a way to do a survey type template that would put the info on a chart. Then each poster could add their own child onto it as they please. I agree the chart is a good way to compare information, and look for patterns.

[faith]

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.

[dee45]

Buster,

I would love to be included with Anthony's results. just tell me what you need. thanks what a great idea.

 

Deanna

[peglem]

It seems like we need a template for parents to fill out and then a way for that info to automatically be added to the spreadsheet. Chemar? Is there a way to do that here?