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Buster

Comparison chart

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I was realizing there was a lot of questions recently on comparing different syndromes. I thought the attached table might be helpful. Let me know what you think is missing:

 

trial10.jpg

 

Please consider this a working draft.

 

I could add reference papers for each cell but it got a bit complicated.

 

Buster

Edited by Buster

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Buster,

 

First of all, let me say "thank you" for all the work you do to help the PANDAS cause. Your posts summarizing research, your surveys and charts are extremely helpful.

 

I reallly like this chart. I see you have a ? in a few places. The one that hits home for me is the "gradual onset OCD." I continually struggle with the "sudden onset" criteria and distinguishing the difference between "waxing and waning" vs extreme exacerbations.

 

When this all started for us, the OCD was not clear enough for us to pick up on. It built over the course of a few months. Even now, as our daughter has come into an exacerbation, it did not change overnight or even over the course of a week. We have slowly watched it build over the course of a couple of months - each day seems to be getting progressively worse. It's crystal clear now, but wasn't necessarily crystal clear a month ago.

 

So from my personal experience, I would change the gradual ? to a "sometimes."

 

Kara

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I like the chart. As for the question marks, is that based on research only? If so, it makes sense. Otherwise, if a parent knows the signs well enough, they may see the gradual onset of OCD before the full blown explosion of OCD we know as the sudden onset. I see that in the increase in siblings on here that are being dx with PANDAS. The parents are luckily catching it early in the siblings because they see the gradual onset of OCD prior to a full blown explosion. They recognize the symptoms better from experience. As for the "remits with time", are you referring to PANDAS,OCD,what remits with time? Can you be more specific what that square represents?

 

As for prednisone, I know the majority on here who have used a steroid, say the benefits are brief, but there are some on here (inc me) that say it wasn't brief and it the benefits stuck and helped with recovery. If it remained on the chart as you listed, perhaps an asterick with a clause on the bottom would help? There are also some on here that are PANDAS and steroids didn't help, especially when a steroid was used a second time or in a subsequent exacerbation.

Edited by Vickie

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Liked the Venn diagram, love this tabular format. Presents a lot of info in a very concise, easy-to-digest way.

 

Maybe we should collect your posts on here and submit 'em to a leading medical journal?!? (If only... would be so valuable for the docs to see.) Or maybe Diana P can find a place for 'em on PANDAS Network?

 

Nicely done, sir!

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Very, very nice.

 

I was just noticing the Sydenham's Chorea not remitting with PEX. My son is diagnosed with Chorea (some have said Sydenham's, and other's haven't said at all. But, he got great remission with PEX until everything came back, because of lack of sufficient ongoing tx.

 

When you say "remission", do you mean "cure" or just that it gets better for a time?

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Remission means a reduction or cessation of symptoms for a period of time. This is not "cure" because we don't know if it will come back.

 

Very, very nice.

 

I was just noticing the Sydenham's Chorea not remitting with PEX. My son is diagnosed with Chorea (some have said Sydenham's, and other's haven't said at all. But, he got great remission with PEX until everything came back, because of lack of sufficient ongoing tx.

 

When you say "remission", do you mean "cure" or just that it gets better for a time?

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Yes, the chart was meant to summarize research. I debated putting footnotes in each box with the papers associated with the finding. When I did it the first time it was pretty messy.

 

I also wondered about putting a column "improves with Advil" but there are no research studies on that outside of alzheimers or studies on Cox-2 inhibitors - yet many parents would report improvement.

 

I agree about the siblings. This highlights a strong genetic link - however, no study that I've found on the topic. I could add the column though.

 

On remits with time, there are arguments in the research papers that Sydenham Chorea is monophasic and self-resolving at 6 months from onset. Digging in that literature about 60% of cases are monophasic and the rest have a second episode within 2 years. On self-resolving, there is data that the chorea does remit at about 6 months in 60-70% of cases. The remaining 30-40% of cases the chorea is sustained without some type of intervention (e.g., drugs or PEX or ...).

 

Finally there is a high OCD association with Sydenham Chorea (estimated at 70%). There is inconsistent data on whether the OCD with SC remits or not without intervention.

 

Buster

I like the chart. As for the question marks, is that based on research only? If so, it makes sense. Otherwise, if a parent knows the signs well enough, they may see the gradual onset of OCD before the full blown explosion of OCD we know as the sudden onset. I see that in the increase in siblings on here that are being dx with PANDAS. The parents are luckily catching it early in the siblings because they see the gradual onset of OCD prior to a full blown explosion. They recognize the symptoms better from experience. As for the "remits with time", are you referring to PANDAS,OCD,what remits with time? Can you be more specific what that square represents?

 

As for prednisone, I know the majority on here who have used a steroid, say the benefits are brief, but there are some on here (inc me) that say it wasn't brief and it the benefits stuck and helped with recovery. If it remained on the chart as you listed, perhaps an asterick with a clause on the bottom would help? There are also some on here that are PANDAS and steroids didn't help, especially when a steroid was used a second time or in a subsequent exacerbation.

Edited by Buster

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Just throwing this out there....could you possibly have a research based chart and an anecdotal chart? Similar to your Fact Sheet that is all based on research and then the FAQ which includes research and anecdotal information. Okay, now that I typed that I realize that may be confusing for some people. Anyway,I applaud you for taking these things on. Thank you!

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I agree with Vicki about the steroids. However, if there is no real research on it - you can't just put in an anecdotal observation.

 

Thank you so much for doing this!

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Is there a reason no Lyme on the chart?

 

I know Cunningham has some Lyme Carditis research...another interesting connection to the Cam K II elevation (maybe elevated Cm K II should also be "symptom" list?), carditis, ARF.

 

interesting note on the OCD in SC % you talked about. According to Cunninghams "Antibody-mediated neuronal cell signalling in behavior and movement disorders" "ARF patients WITHOUT chorea have been shown to be at higher risk for the development of obsessive compulsive symptoms and tics" and she cites Mercandante et al., 2000.

 

Isn't the "Without chorea" interesting?

 

Thanks for all you work on this - I find the chart much easier to understand, and the flexibility of adding symptoms and being able to clearly see if it fall into multiple categories is great - the Venn was getting hard to discern.

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Buster--This is great! :) and just what I needed to see this evening--

 

What a stark contrast it is from "normal" OCD to what our kids go-through with "PANDAS/PITAND".

 

Thanks for posting this--(and yes, please pin it under the ol' Helpful Threads! with refs. if possible:) All the best--

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Hi - Buster, you are amazing and a PANDAS parent too. Your info has helped me and my child so much. Thank you. I like the chart and I would organize it a bit differently since it is for medical providers. I would organize with signs and symptoms first with the differences, then diagnostics, then treatments. If it was done that way, it could have multiple uses from how to differentiate to diagnostics to try and finally some treatments. There really isn't anything like a good summary article with the basics of all of this such as it is and this is a start. Also, I would add eating disorders/swallowing difficulties/anorexia since it does show up in so many of our children. BTW my daughter has also suffered from severe food restriction and swallowing difficulties. It is terrifying. Thank you again for all of your great work.

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What about having more than 2 or 3 other disorders that come and go at same time? I don't know enough about the other disorders, but it seems like when my DS is in exacerbation (and many kids, but not all) he has at least 5 of the symptoms - tics, obsession, urineisis, insomnia, nightmares, daytime urianry frequency, body dismorpism, food issues, separtation anxiety, inability to focus, math and handwriting issues...extreme irritability.

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