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Survey Response : Symptoms and treatments


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Here is another cut of the data from the survey. Here we're looking at the answers to the questions regarding symptoms and their presence at onset, at exacerbations pre-treatment and during exacerbations post-treatment (whatever treatment meant to folks).

 

Not everyone answered this question so I only have data on about 55 kids. Also please remember that this should still be treated as anecdotal since this was not a formal research study with a formal control.

 

The way to read the slide is that this is the number of respondents who said their child had these symptoms at the three time windows.

 

SymptomsResolution.png

 

What is striking on the slide is that Urinary symptoms, tantrums, vocal tic, social anxiety issues resolved for 54%, 45%, 40% and 35% of the cases (respectively) post treatment. I didn't ask intensity questions so there may be more here than is obvious in the slide, but the overall trend if very interesting.

 

Similarly, the following symptoms seemed to linger post treatment: bedtime rituals, mood issues, obsessions, motor abnormalities, separation anxiety. These moved 13%, 17%, 20% and 22% respectively. This probably means I needed to have asked severity questions rather than whether the sympom existed. Given all the huge numbers of variables here (such as time elapsing, different treatments, different interpretations, ...) I was hesitant to post this graph, but thought it a good summary of what I've heard anecdotally on the forum.

 

Please remember that the survey does not have a control and so the information really should be treated as more things for followup surveys/case studies to study.

 

Buster

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Please remember that the survey does not have a control and so the information really should be treated as more things for followup surveys/case studies to study.

 

Buster

 

Buster - this is very good information. I hope it serves to spark some questions for future research studies.

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Buster,

Thank you so much for all the work! I've been thinking about our sample group, and while its frustrating that we probably aren't surveying any people who's kids had one ivig and got better (what I hope is approx 80% of the pandas population!) we probably have a large number for whom one ivig failed (I'm guessing that those folks stick around this forum longer, and I'm praying of rht day I don't feel compelled to check in because ds is doing so well!), so maybe there is an opportunity to learn something about those kids? I guess we are seeing that untreated lyme can cause it to fail,what about age, sex, IGG levels?

 

I know that Dr K claims that the older they are, the less likely to respond to treatment (or maybe they just need 2 or 3 treatments?). Do we have enough data to see if that is true?

 

THANK YOU!!! While I'm really excited about the ivig study they will be doing in the fall, I'm feeling like by the time its done and published could be too late to help ds..I'm trying to figure out if ds is in a higher risk category for ivig "failure". Dr K also mentioned that food issues have higher chance of relapse with re exposure. I can't recall if your survey asks about number of ivig's..I took it prior to ours (a week ago).

 

Kerry

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Hi Kerry,

 

The question tried to get after the IVIG information by looking at who had 400mg/kg, 1.5g/kg and 2g/kg and whether those had efficacy > 3 months or there had been recurrance. Only about 50% of the people answered this section of the material, so I've got about 50 children to run stats on. Given the 3:1 boy/girl ratio, the studies are all going to be underpowered for any age variance (which is why I was looking there first). If we have different trends in boys/girls on symptoms (or efficacy), then I have to split on sex for trending.

 

Unfortunately, this means that I'm really looking at something more like 15 girls and 45 boys for this section of the study. Drawing trends on only 15 girls with other random factors will just confound -- but I'll pull what I can.

 

Buster

 

 

 

Buster,

Thank you so much for all the work! I've been thinking about our sample group, and while its frustrating that we probably aren't surveying any people who's kids had one ivig and got better (what I hope is approx 80% of the pandas population!) we probably have a large number for whom one ivig failed (I'm guessing that those folks stick around this forum longer, and I'm praying of rht day I don't feel compelled to check in because ds is doing so well!), so maybe there is an opportunity to learn something about those kids? I guess we are seeing that untreated lyme can cause it to fail,what about age, sex, IGG levels?

 

I know that Dr K claims that the older they are, the less likely to respond to treatment (or maybe they just need 2 or 3 treatments?). Do we have enough data to see if that is true?

 

THANK YOU!!! While I'm really excited about the ivig study they will be doing in the fall, I'm feeling like by the time its done and published could be too late to help ds..I'm trying to figure out if ds is in a higher risk category for ivig "failure". Dr K also mentioned that food issues have higher chance of relapse with re exposure. I can't recall if your survey asks about number of ivig's..I took it prior to ours (a week ago).

 

Kerry

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