Updated Survey

[Buster]

I think I've incorporated all the feedback from the prior thread on the PANDAS survey and have started a new collector.

 

Please try to fill out the survey again. I'm sorry for having you go through it twice. It was very difficult to get some of the questions right.

 

The survey is at http://www.surveymonkey.com/s/PANDASSurvey2child1

 

Other children can be entered by replacing the end of the URL with child2 or child3, etc.

 

This survey has 27 questions. If you have more comments please reply here or on the last question of the survey. The feedback and suggestions have been outstanding.

 

This is a bit more complicated, but I hope it will not take longer than 15-20 minutes. There are many great comments that I haven't been able to act on yet. I'm working on them, but please repost here if something is off.

 

Thanks,

 

Buster

Edited August 3, 2010 by Buster

[Mary M]

Buster,

 

Please know you don't ever have to apologize to me for all the work and effort you invest in our children. I will gladly and willingly spend whatever time is necessary to fill out a survey, questionnaire, participate in a focus group, fly to Cali...whatever you ask, I'll do it. I'll do it twice, three times, even more if necessary...because I am grateful for all that you have done for our daughter and all the children represented on this forum.

 

And if you ever need help, please don't hesitate to ask. I'm no scientist but I follow directions really well and would be willing to assist with even the most mundane tasks if it would be at all helpful to you.

Thank you!

Mary

from Michigan

[thereishope]

I'm a little confused on ques #7.What is "in subsequent exacerbations, post antibiotics" Meaning during recovery (once we feel the infection was gone), what was present? Does it mean, viral triggers? Or does it mean any exacerbation following the initial one?

Edited August 3, 2010 by Vickie

[airial95]

Done!! And I'll take it over as many times as you want to get the info you're looking for! Your dedication to all of our kids is just amazing!!!

[Buster]

I'm a little confused on ques #7.What is "in subsequent exacerbations, post antibiotics" Meaning during recovery (once we feel the infection was gone), what was present? Does it mean, viral triggers? Or does it mean any exacerbation following the initial one?

Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities.

 

Buster

[thereishope]

Thanks! I'll complete it tonight now that I know what it means. My son's symptoms did vary with each exacerbation.

 

I'm a little confused on ques #7.What is "in subsequent exacerbations, post antibiotics" Meaning during recovery (once we feel the infection was gone), what was present? Does it mean, viral triggers? Or does it mean any exacerbation following the initial one?

Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities.

 

Buster

[thereishope]

On ques #23, I did answer that we treated infection with antibiotics since we did confirm infection, but my son also falls into the catagory of no sore throat. It was sheer luck we swabbed him that first exacerbation.

[becjonz]

Done!! And I'll take it over as many times as you want to get the info you're looking for! Your dedication to all of our kids is just amazing!!!

Airial said it so well that I just have to say ditto! THanks so much Buster!

[JAG10]

Hi Buster,

 

I don't know if I should participate on behalf on dd10 because I don't want to mess up otherwise meaningful data. I don't know exactly when the initial onset was, but it was somewhere in the 2 y.o. range (2002) making memory of symptoms and what started when difficult to convey. I know behaviors were episodic for years early on, remember good and bad periods, but after March, 2007 everything went chronic, but not always with all the demons showing up to party at the same time.

 

Or I could just click "other" in some boxes and put chronic 3+ years? I guess what I'm trying to sense from you is if symptoms began around 2 y.o. and diagnosis was at 10 y.o., that's a long time past the initial onset to try an distinguish from that and other episodes. Maybe define "delayed diagnosis as X number of years and skip from some questions to others?

 

I'll wait to see if others feel the same way and if there is a consensus we might be muddying some of this data.

 

Jill

[Buster]

Well, I found another problem. I meant to ask what were the symptoms at time of Cunningham blood draw -- unfortunately looking at the notes, many had Cunningham draws outside an exacerbation. Thanks to all who pointed this out. I think we're getting close on the questions. The other recommendation was to be very specific on terms.

 

Anyone have suggestions for definitions?

 

1st episode (in retrospect)

triggering onset -- i.e., the one that caused you to seek help

exacerbations pre-antibiotics/treatment

exacerbations post-antibiotics/treatment

 

Anyone have some terms here that might help unify terminology? Anyone found a paper that defines the patterns?

 

Buster

 

Thanks! I'll complete it tonight now that I know what it means. My son's symptoms did vary with each exacerbation.

 

I'm a little confused on ques #7.What is "in subsequent exacerbations, post antibiotics" Meaning during recovery (once we feel the infection was gone), what was present? Does it mean, viral triggers? Or does it mean any exacerbation following the initial one?

Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities.

 

Buster

[Buster]

Do you see a way to structure a separate question that would have made it easier to answer? I added "other" on a lot of questions specifically to get at what you are raising, but also realize it isn't obvious where to put data. I'm essentially looking at "others" to see what should have been in the original question or might lead to another question.

 

My biggest concern is making this too complicated to fill out. Please let me know if there are questions that are still struggles.

 

Someone just pointed out a huge hole in the survey where I didn't ask about the timing of the Cam Kinase II draws (i.e., was the child in an exacerbation), were they already on antibiotics at the time of the draw, had any immunomodulating treatment been done.

 

Another great comment was the confusion about which episode the data is for and confusion about the shape of the ramp of symptoms. I'm trying to fix that one in the survey.

 

Buster

 

 

Hi Buster,

 

I don't know if I should participate on behalf on dd10 because I don't want to mess up otherwise meaningful data. I don't know exactly when the initial onset was, but it was somewhere in the 2 y.o. range (2002) making memory of symptoms and what started when difficult to convey. I know behaviors were episodic for years early on, remember good and bad periods, but after March, 2007 everything went chronic, but not always with all the demons showing up to party at the same time.

 

Or I could just click "other" in some boxes and put chronic 3+ years? I guess what I'm trying to sense from you is if symptoms began around 2 y.o. and diagnosis was at 10 y.o., that's a long time past the initial onset to try an distinguish from that and other episodes. Maybe define "delayed diagnosis as X number of years and skip from some questions to others?

 

I'll wait to see if others feel the same way and if there is a consensus we might be muddying some of this data.

 

Jill

[JAG10]

Buster,

 

I tried to go through and identify the ones I felt I couldn't pick one of the choices and don't want to skew data. Here's what I came up with and a suggestion for choice or what to type in other if it is available.

 

#11- Chronic, though varying symptoms for years

#12- Chronic, though varying symptoms for years

#19- Late dx and chronic (several years after onset of symptoms); that doc could not match to Swedo's criteria from that point in time

#20- Dx was missed due to age and lifetime asymptomatic to strep even with positive titers, ect.

 

My dd10 is now 10 weeks post her only IVIG. She is doing better than I can ever remember her being before, you just can't imagine what it is like to get your child back after so many years of suffering and wondering WTH is wrong?!?! Our family has gone from hopeless (pre-diagnosis) to determined (seeking treatment) to hopeful in the course of the past 6 months. I thank God everyday for gracing us with a doctor willing to push the continuum of risk and give our daughter her life back.

 

That being said, I don't want to mess up data that can help other kids in anyway!!!!!

 

Jill

[airial95]

Buster,

 

I think my challenge with some of the questions was that we are still in the midst of treatment from our initial onset. We've been on antibiotics for 6 months, and it's been making very steady (albeit slower) progress. So some of the before/after treatment questions for the various options (therapy, etc...) are tough for us to answer because we're sort of in progress. So we can't say conclusively that it worked, worked initially but stopped, didn't work at all, etc... There should be a "working - but still in progress" or something option for those of us who are still somewhere in the middle.

 

Just a suggestion. I love what you've been doing!!

 

Thanks

[Tenacity]

Dear Buster,

 

I am engaged, excited, even inspired, by this survey project! At the same time, I am reminded why I was never able to finish a multiple-choice test in school, because I was always the one sitting there, when the clock stopped, with an incomplete form, thinking, "None of these choices is right!..."

 

A few thoughts:

 

#5. I believe that the choices here are not comprehensive enough, and also that they are overlapping. Frankly, I wonder whether non-psychiatric phrasiology might help? Who defines what an "obsession" or a "compulsion" is? I think, "intrusive thoughts," and "behaviors you can't stop," are better than "OCD," which promptly conjures up images of people adjusting picture frames, washing their hands too much, and going back to check whether or not they locked the door too many times. I am not at all suggesting that such symptoms are insignificant or easy to deal with. I am suggesting that PANDAS/PITAND is more.

 

Please explain to me the distinctions between "mood issues," "other anxieties," and "depression"...

 

I now know that there were indicators of my son's illness before I was in any position to recognize them as such. E.g., the "nighttime rituals" thing. Yes, I now know there was such a "ritual." But at the time, I didn't know what a terrible omen it was. My son became terrified of his room, of the closet, of the space under the bed -- and he began draping his lower bunk bed with blankets every night. Sure, in retrospect, I know this fits in with the current diagnosis, but at the time, it looked like a creative kid building a fort!

 

For me, choosing 1st, 2nd, 3rd symptoms seems ridiculous. It was a hideous smorgasbord,... If I had to name the three things that "punched me in the nose," and told me we were in big trouble, it would be sudden and SEVERE insomia, hyperactivity, and generalized anxiety....

 

#6. Same thing as with #5. Sure, the onset was like a bolt of lightening. But, in retrospect, certain things I dismissed at the time seem meaningful now.

 

#7. Worried me most when? Episode one, he was hallucinating. Current episode, over three years later, he can't speak, read, write, or draw. This question should take into account the variety in nature of illness, course of illness, and length of illness.

 

#9. Again, more complicated than the question suggests. What if there is a distinctive episode, but it passes, and is only associated with PANDAS/PITAND after a complete collapse, which comes later?...

 

#13. I believe this is a dangerously incomplete and misleading list of "OCD" symptoms. Too limited, too cliched. Among other things, my child was afraid of a hair comb, saw blood coming out of light fixtures, and screamed and clutched as though his life depended on it when I tried to change his bed sheets. How about a place for these kinds of symptoms?! (Although we reported these symptoms and many more to our doctors, not a single one ever called them "OCD" til we escaped our wrong bipolar disorder diagnosis and figured out we were dealing with post-infectious neuropsychiatric autoimmune disease.)

 

Even "hand washing" is really too limiting. What if the kid showers too much? Or wears baggies over his feet (a new symptom in our house)?...

 

#14. Why is there no choice for "FIASCO"! -- or "undetermined, work in progress"?!

 

#15. My child was prescribed many more drugs than you have on your list, and they were prescribed for bipolar disorder (not for tics or OCD), which we now know was the wrong diagnosis.

 

#17. We have seen many doctors in certain categories. In our case, it was a brilliant local adult neuro-ophthalmologist (a true scientist, humanist, and brain expert!) who made the diagnosis, after dozens of other doctors, including an entire department of child neurologists at our local hospital, had treated us like worse than dirt. One special child psychiatrist helped us find this adult neuro-ophthalmologist. All the other child psychiatrists were just plain awful. I'm the one who figured out it was likely

post-infectious neuropsychiatric autoimmune disease, in spite of them. They labeled me as "hysterical," "delusional," and the cause of my son's "psychogenic" symptoms. One doctor even went so far as to speculate that perhaps sexual abuse might be to blame for my son's symptoms....

 

#18. See #17.

 

#19. Don't know. I'm guessing negative strep or strep antibody titers is the main reason for mistaken "rule-outs."

However, I've been looking over my son's hospital records, and I found that the first psychiatrist we met -- the one who screened us in the psychiatric emergency room (and, interestingly enough, the only one who treated us naturally and respectfully)

suspected PANDAS. Although at the time I asked, repeatedly, what was being tested for, what was being ruled out, what else this illness might be, not a single doctor ever said a single word to me about PANDAS. Although the anti-strep bloodwork proved to be negative, I can see from the records that the results were not even in when the attending psychiatrist dismissed the possibility of PANDAS.

 

#20. "Onset" was more than three years past before anyone thought of PANDAS/PITAND. Three infectious illnesses preceded "onset," but who could say now just what they were?...

 

#21. Like a number of others, our son was tested shortly following a steroid burst -- also many months after exacerbation of illness kicked in.

 

#24. Again, no choices fit for us, because the illness was not identified until years after onset....

 

#25. Probably. We'll never know. When my son "fell off a cliff" following what appeared to be three different infectious illnesses in succession, and suddenly became psychotic and suicidal, I called our pediatrician repeatedly and got no response. (Yes, we've since switched!) On one occasion, after I gave a brief description of what was happening, emphasized that it was urgent, and said I needed to speak with the doctor, the receptionist said, "You've dialed the wrong number -- This line is only for sick children"...

[JAG10]

Dear Buster,

 

I am engaged, excited, even inspired, by this survey project! At the same time, I am reminded why I was never able to finish a multiple-choice test in school, because I was always the one sitting there, when the clock stopped, with an incomplete form, thinking, "None of these choices is right!..."

 

A few thoughts:

 

#5. I believe that the choices here are not comprehensive enough, and also that they are overlapping. Frankly, I wonder whether non-psychiatric phrasiology might help? Who defines what an "obsession" or a "compulsion" is? I think, "intrusive thoughts," and "behaviors you can't stop," are better than "OCD," which promptly conjures up images of people adjusting picture frames, washing their hands too much, and going back to check whether or not they locked the door too many times. I am not at all suggesting that such symptoms are insignificant or easy to deal with. I am suggesting that PANDAS/PITAND is more.

 

Please explain to me the distinctions between "mood issues," "other anxieties," and "depression"...

 

I now know that there were indicators of my son's illness before I was in any position to recognize them as such. E.g., the "nighttime rituals" thing. Yes, I now know there was such a "ritual." But at the time, I didn't know what a terrible omen it was. My son became terrified of his room, of the closet, of the space under the bed -- and he began draping his lower bunk bed with blankets every night. Sure, in retrospect, I know this fits in with the current diagnosis, but at the time, it looked like a creative kid building a fort!

 

For me, choosing 1st, 2nd, 3rd symptoms seems ridiculous. It was a hideous smorgasbord,... If I had to name the three things that "punched me in the nose," and told me we were in big trouble, it would be sudden and SEVERE insomia, hyperactivity, and generalized anxiety....

 

#6. Same thing as with #5. Sure, the onset was like a bolt of lightening. But, in retrospect, certain things I dismissed at the time seem meaningful now.

 

#7. Worried me most when? Episode one, he was hallucinating. Current episode, over three years later, he can't speak, read, write, or draw. This question should take into account the variety in nature of illness, course of illness, and length of illness.

 

#9. Again, more complicated than the question suggests. What if there is a distinctive episode, but it passes, and is only associated with PANDAS/PITAND after a complete collapse, which comes later?...

 

#13. I believe this is a dangerously incomplete and misleading list of "OCD" symptoms. Too limited, too cliched. Among other things, my child was afraid of a hair comb, saw blood coming out of light fixtures, and screamed and clutched as though his life depended on it when I tried to change his bed sheets. How about a place for these kinds of symptoms?! (Although we reported these symptoms and many more to our doctors, not a single one ever called them "OCD" til we escaped our wrong bipolar disorder diagnosis and figured out we were dealing with post-infectious neuropsychiatric autoimmune disease.)

 

Even "hand washing" is really too limiting. What if the kid showers too much? Or wears baggies over his feet (a new symptom in our house)?...

 

#14. Why is there no choice for "FIASCO"! -- or "undetermined, work in progress"?!

 

#15. My child was prescribed many more drugs than you have on your list, and they were prescribed for bipolar disorder (not for tics or OCD), which we now know was the wrong diagnosis.

 

#17. We have seen many doctors in certain categories. In our case, it was a brilliant local adult neuro-ophthalmologist (a true scientist, humanist, and brain expert!) who made the diagnosis, after dozens of other doctors, including an entire department of child neurologists at our local hospital, had treated us like worse than dirt. One special child psychiatrist helped us find this adult neuro-ophthalmologist. All the other child psychiatrists were just plain awful. I'm the one who figured out it was likely

post-infectious neuropsychiatric autoimmune disease, in spite of them. They labeled me as "hysterical," "delusional," and the cause of my son's "psychogenic" symptoms. One doctor even went so far as to speculate that perhaps sexual abuse might be to blame for my son's symptoms....

 

#18. See #17.

 

#19. Don't know. I'm guessing negative strep or strep antibody titers is the main reason for mistaken "rule-outs."

However, I've been looking over my son's hospital records, and I found that the first psychiatrist we met -- the one who screened us in the psychiatric emergency room (and, interestingly enough, the only one who treated us naturally and respectfully)

suspected PANDAS. Although at the time I asked, repeatedly, what was being tested for, what was being ruled out, what else this illness might be, not a single doctor ever said a single word to me about PANDAS. Although the anti-strep bloodwork proved to be negative, I can see from the records that the results were not even in when the attending psychiatrist dismissed the possibility of PANDAS.

 

#20. "Onset" was more than three years past before anyone thought of PANDAS/PITAND. Three infectious illnesses preceded "onset," but who could say now just what they were?...

 

#21. Like a number of others, our son was tested shortly following a steroid burst -- also many months after exacerbation of illness kicked in.

 

#24. Again, no choices fit for us, because the illness was not identified until years after onset....

 

#25. Probably. We'll never know. When my son "fell off a cliff" following what appeared to be three different infectious illnesses in succession, and suddenly became psychotic and suicidal, I called our pediatrician repeatedly and got no response. (Yes, we've since switched!) On one occasion, after I gave a brief description of what was happening, emphasized that it was urgent, and said I needed to speak with the doctor, the receptionist said, "You've dialed the wrong number -- This line is only for sick children"...

 

This is why you, Tenacity, win my superlative vote for Best Username..... obviously accurate and well deserved.