Short Poll for PANDAS/PANS Mothers

[Administrator]

This anonymous poll is intended only for mothers with a biological child who has been diagnosed with PANDAS or PANS (or mothers who believe their biological child has PANDAS or PANS).

 

Even if the child is now older and symptoms have subsided, please complete the poll.

 

A member of the ACN Latitudes Forums "bobh" is the father of a youngster with PANS and has expressed a special interest in having this poll.

 

Thank you for your participation.

 

- ACN Latitudes Administrator

[NYCMom]

Would love to know the purpose or hypothesis behind the poll?

[bobh]

Thanks for your question.

We are avoiding stating further details about a possible link between the birth mother's blood type and PANDAS/PANS in the child, until after the poll closes, because responders knowing certain details might cause a selection bias in the responses. That is, if responders know its about a specific blood type, more people of that blood type might respond. That may be what happened in a similar poll done on a facebook group, where it looked like there was an overwhelming association. But, the way that poll question was worded may have caused more moms with the blood type to respond, so this poll distinctly avoids that problem by being "mum" on specifics.

 

The question was asked by a mom in small town rural Ontario, Canada, and I was just intrigued to pursue it. So, this is "Vanessa's Poll".

 

Note that mere association cannot say anything about causation. So if there is some link, there could be several different possible causes for the link (for example, one of them could be a genetic one). This poll cannot determine which of any of a number of explanations (i.e. causes) are true.

[NYCMom]

As a former medical researcher I totally understand. Looking forward to the results and explanation, although you're going to need a lot more responses

[bobh]

Yes, I am afraid that this is not working well - mostly because guests cannot vote. There have been over 200 views, mostly by guests.

Even if we don't get an appropriate number of responses here, I will at some point still publish the hypothesis, with the results from the other poll, including why they might be suspect.

[bobh]

We have up to this point had 584 views, and 11 votes in this poll (this is because most views are by guests, and votes are only by members).

We're going to run the poll a bit longer, but to keep up some interest for all those that have viewed or voted, I thought I would share a very large, professionally done and analyzed poll:

http://online.liebertpub.com/doi/10.1089/cap.2016.0105

 

This was just published this year, but it has been some time in the making. When I first skimmed it, I thought it was saying things that many of us knew well from our own experiences: "... a high rate of medical comorbidity suggesting generalized immune dysfunction, a profound impact of PANS episodes on functional status, and a role for early resolution of infection through antibiotic treatment ... ". Yeah, what else is new.

 

But when I read in detail, I found that there is a tremendous amount of information here, including some truly new things, some of which I have been wanting to know for a long time.

 

For example this result at the top of page 6 (right hand side) in the .pdf version: only a little more than half of all PANS/PANDAS patients get complete resolution of their symptoms. In fact, it it just under half (49%) if the patient never got completely better (even for a short time) on abx, and well over half (62%) if that did happen. The paper quotes some fancy statistics for the confidence in that difference (49% vs. 62%), but what I would have liked is the basic confidence of either or both of the 49% or the 62%. But it must be very high confidence given the sample sizes they had.

 

Unfortunately, my kid is in the 49% group - he's always had some symptoms even after long courses of abx. So now I know he is just slightly more likely than not to have some effect for the rest of his life.

 

There is lots more here too - I'll poke further if there is interest.

[Sirena]

Maybe you can set up a poll and link in survey monkey or qualtrics to get around the guest issue. I'd like to see a poll on the association between PANDAS/PANS and Lyme&Co...

[bobh]

Yes, the outside poll idea was discussed in messages with admin and another member, very soon after it was realized how many guests looked, and realized they couldn't vote. I notice that there are now 13 votes among 754 views.

An outside poll would be sometime in the future, as opposed to right away. In the meantime, we could collect additional questions, like yours on lyme and PANS.

 

Lyme is certainly a significant link, as Dr. Jenike lists it right after strep as a trigger in his 1-minute video here:
https://www.youtube.com/watch?v=qDuxlDWMgso

I see that the published survey that I linked to above is no longer available in full for free (it was for a while, and I managed to download the .pdf while it was). But it did report this:
"Lyme disease (Borrelia burgdorferi) was confirmed or suspected in 33 patients (5%), and Lyme coinfection was confirmed or suspected in 26 (4%)."

If that sounds lowish, it might be if they stuck to the strict CDC criteria for lyme. I don't know if that is the case (the questions weren't published), I am only speculating.

One problem with directing people in this specific group to a survey about lyme, is that because the group is called "PANDAS/PANS Lyme Included", it could have a selection bias. That is, compared to the fraction of lyme among PANS/PANDAS in general, the fraction in this group might be higher just because those with lyme may be looking for a group that specifically discusses lyme as a trigger. So to get the real fraction, it should be polled from an unbiased source. And, the criteria for the lyme diagnosis needs to be clear.

[mom2gsd]

My son's PANDAS began in '08 (+Lyme '09)....slightly better in 2012-13....here it is 9 years later....now Epilepsy 2015 (intractable Lennox-Gastaut). I believe it's all related and it sucks!

[bobh]

Yes, I would tend to believe its all related, and the argument for that is to take the rates of PANDAS, lyme and Lennox-Gastaut and multiply them together - that would be the probability of getting them all independently.  Because that is so unrealistically low, the reasonable conclusion is to assume that they are not independent, but connected (e.g. one begets the other).

This thread here is for/about the poll for PANDAS mothers' blood type .  I would encourage you to do the poll if you know your type.  What you will eventually get for your time is a brief report (here on this forum) of analysis of the results.

Otherwise, there are lots of posts on different topics in this forum, further down from the top where you found this poll.

[Lwei66]

Hi, I am new here. Your poll gave me an idea; is there any statistics on what percentage of the patients that have PANDAS/PANS or TS was breast fed for over 3 months or more?

Lwei66

[bobh]

Great question!  Unfortunately, its too late to ask in this poll, but its a good question to list for a future poll.

If you type "breast feeding" into the search dialogue box (near the top right corner) while you are in this forum, you will get plenty of hits of people discussing breast feeding and PANS.  That doesn't give the stats you are asking about, but there are interesting ideas tossed around in those messages.

[MichelleAnti-EMom]

I have a question. I have 2 children that have pans/pandas symptoms.  I was diagnosed with Anti-E antibodies  in my blood before I had children they diagnosed me with Anti-E before a surgery in my pre-op labs before an ovarian tumor removal. All of my pregnancies were complicated by these Antibodies.  It is like being RH NEG but there is no injections they can give you to stop the process.  I am from a very small area and if If I could live life over again would have gone 2 a larger hospital to deliver. Long story short 2 of my children were born very jaundice from these antibodies. They debated on treating my daughter with Intravenous immune globulin (IVIG) which is standard for treating these infants in the end our former PED chose against the IVIG  and my daughter's bilirubin levels went very high.  My antibody levels were highest in my last 2 pregnancies and those are my 2 children that have PANDAS/PANS symptoms.  I have wondered for a very long time if these antibodies could have caused my children's autoimmune issues???  Any other Mom's here have pregnancy antibodies?  

[bobh]

Wow, that is a good question.

The poll has just been closed now, and I can confess that the original purpose of the poll was to check if there were more than normal number of Rh negative moms.  There were more Rh negative moms in the survey than in the general population, but the results were such that there was some sizable possibility (14%) that this might have been just a chance result.  There is a much bigger, stronger survey that strongly links autoimmune diseases to Rh negative in the person with the disorder.

But there was another surprise result - that and discussion of the results will be posted in the main PANDAS/PANS forum.