Updated Survey

[Buster]

Hi Folks,

 

Here's one chart from the survey I thought I'd share. This does show that pediatricians are the key.

 

Buster

[matis_mom]

Hi Folks,

 

Here's one chart from the survey I thought I'd share. This does show that pediatricians are the key.

 

Buster

Or the missing link, as the case may be!

[Buster]

Another cool diagram

 

Of particular interest seems to be the reported difference in some symptoms post-antibiotics:

* urinary issues

* separation anxiety

* age inappropriate tantrums

* sensory issues

 

Vocal tic was interesting because it seemed to arise after intial episode.

 

Very hard to tell the strength of the correlations here because of the age spread in the data, but interesting.

 

[Buster]

Here's one on people's experience with medication -- please treat this appropriately -- the survey data is way underpowered for any real conclusions here. I didn't pull dosage or duration or anything else and people have lots of different co-morbid conditions. Still, interesting trending and I'll see if we can get more from it.

 

Buster

[Megs_Mom]

#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"...

 

Almost every single sentence of your post broke my heart. I am so very sorry for what you have been through, and your son. I'll add your son to the pictures in my heart that make it impossible to ever stop advocating and educating for our children. And yes, you have the best screen name. I'm so grateful for mom's like you.

 

By the way, I think I'd agree that non-psychiatric terms might help many parents answer the survey, is that PANDAS can hit so hard and so intensely, that neither the parent or the physician may be able to see the OCD underlying many of the issues. It took us years to correctly understand different manifestations, and how they were primarily based in OCD. Although I also think that some of the kids that have more hallucination type symptoms are experiencing a more intense/serious variant of PANDAS which makes it even harder to get help.

 

The biggest thing that I experienced, and that I hear from other parents, is that doctors often do not BELIEVE us - that our child was fine yesterday, something medical happened to her - not a trauma of abuse, but a trauma of infection. That's why we NEED our pediatricians to understand this disease. Typically, they see our kids multiple times, so they should be able to see the difference.

[mkur]

The survey doesn't address the issue of people with unstable moods. My son cannot take stimulants or SSRI without a mood stabilizer. They make him manic and I would have to say that they makes things worse. But if he takes depakote or another anti-seizure med then he can tolerate stimulants and SSRI and they would be helpful. Then you get into the issue of taking more meds to treat side effects. UGH... This is a big problem for people with unstable moods or who are bipolar.

 

Thanks for creating and taking the survey.

[Buster]

Thanks Tenacity, this is great. I'll incorporate in next round.

 

Buster

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!..."

 

Edited August 7, 2010 by Buster