"Sudden Onset" definition and studies

[JAG10]

Isn't the CYBOCS normed for ages 6-14? What do we do with kids with earlier onset? The BASC 2 could be an option as it begins age 2 and covers a broader range of behaviors listed as associated with PANDAS, but I don't think anyone has used it in this kind of capacity.

 

I recall Dr K mentioning to me last summer he and Swedo were working on specific criteria for the under 5 crowd. This conversation was related to the white paper, but perhaps separate from the white paper itself. Perhaps we should start calling it the invisible paper instead.

Edited August 1, 2011 by JAG10

[nicklemama]

LOL, I'd second the motion for calling it the invisible paper!

[thereishope]

Question, do you think if it is worded this way, docs will make kids wait a month to see how bad they get or if they will refuse to treat until the child is fully incapacitated? Don't want that window of catching it very fast to hopefully remit it with antibiotics to pass.

 

"Sudden Onset means a change of symptoms from a baseline of functioning behavior to an inability to function over the course of 1 month. This abrupt change of behavior may be measured using standardized instruments such as a change in CYBOCS of +16pts or by noting changings over time. In general, the child was functioning (perhaps with some quirky behavior/compulsions) and has transitioned to being unable to function (constant imparement, "possessed", everyone on eggshells, unable to function in a school setting)."

Edited August 1, 2011 by Vickie

[EAMom]

Question, do you think if it is worded this way, docs will make kids wait a month to see how bad they get or if they will refuse to treat until the child is fully incapacitated? Don't want that window of catching it very fast to hopefully remit it with antibiotics to pass.

 

"Sudden Onset means a change of symptoms from a baseline of functioning behavior to an inability to function over the course of 1 month. This abrupt change of behavior may be measured using standardized instruments such as a change in CYBOCS of +16pts or by noting changings over time. In general, the child was functioning (perhaps with some quirky behavior/compulsions) and has transitioned to being unable to function (constant imparement, "possessed", everyone on eggshells, unable to function in a school setting)."

 

Good point Vickie...so change to "1 mo. or less" ?

 

Ideally, a child would have a workup for infectious causes (throat culture etc) and antibiotics/etc at onset of behavioral changes, but this is with the first episode where the parent has no idea what is going on.

Edited August 1, 2011 by EAMom

[thereishope]

That would be the ideal, but then you still have the other kids that will be denied abx because they don't test positive for something. So, I would think this defintion is to also protect those children and show doctors they can "over ride" the strep tests and such because the child fits the PANDAS criteria otherwise.

 

I think what the ideal is is that a child will get more than the normal 5 days Azith or 10 days Augmentin if they fit the criteria. To date, parents still have a hard time getting this from their first line of defense...the pediatrician. Docs still want that official diagnosis before prescribing more than the typical course of meds. I can see some saying "I'll give you 10 days worth, but then we need to wait the month that is cited and go from there".

 

Sorry...yes...one month or less is fine

[Kiera]

The "sudden onset" criteria also delayed diagnosis for my ds, but also the "presence of chorieform movements" was difficult to interpret for me so I put PANDAS to the back of my mind until the 2nd exacerbation 6 months later following a chest/ear infection and same pattern of behaviors followed. It seems there's such a range of symptoms in our kids that the criteria needs to say "may include, but not necessarily include xyz.."