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Checking back in regarding FAQ


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I was going over the current FAQ to see if there were things missing that should be added in.

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Anyone have questions that have come up over past few months that we need to roll in.

 

Some I've seen have been:

1) Why do I see exacerbations with illnesses other than GABHS?

 

2) What is the accuracy of a strep throat culture (rapid or AGAR)?

 

3) Is blood work more accurate than a throat culture?

 

4) If there's no ASO rise, is there still an anti-neuronal antibody rise?

 

5) What's the difference between colonization and infection? Why does it matter?

 

6) Is there a good way to chart symptoms to make it easier to be objective?

 

 

Others?

 

Buster

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Hi Buster - I don't know if I have ever actually read these - if I did it has been a while! I am wondering if you could add something in about GABHS vs. Strep pneumoniae as that has been a source of discussion lately.

 

Also, could you explain the reason why some kids are immune deficient, yet have PANDAS - since it seems that an autoimmune response is just the opposite of immune deficiency.

 

Thanks!

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Is the "canary syndrome" discussed in it? I can't remember? Amongst the questions I get a lot through fb messaging from seeing me on other groups are (I'm sorry, but some may be addressed on the FAQ, but I can't reread it right now):

 

Once starting antibitiocs, how quickly should I see improvement?

 

More often, I'm getting parent that say penicillin was working, then 2 weeks later their child dramatically backslides (and that 2 week mark is cited often), a quick answer of what the following steps may be to cut and paste for that would be good. I usually quote the article on the failure rate, but they want to know why the pen worked at first then stopped.

 

I don't know how to sum up this one and others are welcomed to write a summary....how do I know if it's PANDAS or autism. That's been a hot one lately.

 

Prophylactics...which ones seems to be the most effective and how often would someone suggest they be taken?

 

Suggestions for dealing with insurance and IVIG.

Edited by Vickie
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What baseline blood tests are recommended in addition to ASO, anti-DNASE B, and Cam Kinase? It would help to list all the suggested tests. This question seems to keep popping up. Include igg and sub-tests, thyroid, Lyme, CBC w-diff, ANA, glutathione, hormone (if child is older), etc.

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Here's a sort of FAQ (well, it's not frequent, but it is a question!) and a couple of others.

 

1) My DS8 showed a total stop of symptoms after a MAJOR blood draw -- not a couple of tubes, but a lot, because a couple of different drs had ordered tests and they all added up. If PEX removes antibodies, how about the idea of therapeutic phlebotomy to also diminish the level of antibodies? Might have to be repeated every couple of months, but a lot less invasive and a lot less expensive than IVIG or Pex.

 

2) Also, there has been talk about whether probiotics with strep strains in them are okay.

 

3) What to do about asymptomatic family members who show high titres.

 

Thanks!

 

I was going over the current FAQ to see if there were things missing that should be added in.

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Anyone have questions that have come up over past few months that we need to roll in.

 

Some I've seen have been:

1) Why do I see exacerbations with illnesses other than GABHS?

 

2) What is the accuracy of a strep throat culture (rapid or AGAR)?

 

3) Is blood work more accurate than a throat culture?

 

4) If there's no ASO rise, is there still an anti-neuronal antibody rise?

 

5) What's the difference between colonization and infection? Why does it matter?

 

6) Is there a good way to chart symptoms to make it easier to be objective?

 

 

Others?

 

Buster

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I know you aren't suppossed to do a steroid burst before a CamK test ...and I'm assuming some of the other immuno tests as well. I don't know time frame that steroids can effect test results. Might want to include this information since most pandas parents are seeing so many diff. docs that it is easy to get your steroids and do a burst through your phychiatrist, and a month later have an immunologist draw blood for something.

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How about something regarding "sudden onset" For some, symptoms appear very quickly or overnight. For us, however, it was more gradual. At a minimum, it was over the course of a few months before it became clear something was "really wrong". If I really look back and analyze a few events/symptoms, it could have been over the course of a couple of years.

 

When I asked this of Dr. B., he said that not all children will present the same way, since hey all have different a genetic make-up.

 

Kara

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What baseline blood tests are recommended in addition to ASO, anti-DNASE B, and Cam Kinase? It would help to list all the suggested tests. This question seems to keep popping up. Include igg and sub-tests, thyroid, Lyme, CBC w-diff, ANA, glutathione, hormone (if child is older), etc.

 

I would also add to this list the vaccine titers which would help to get ins coverage for IVIG

 

Stephanie

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I know you aren't suppossed to do a steroid burst before a CamK test ...and I'm assuming some of the other immuno tests as well. I don't know time frame that steroids can effect test results. Might want to include this information since most pandas parents are seeing so many diff. docs that it is easy to get your steroids and do a burst through your phychiatrist, and a month later have an immunologist draw blood for something.

 

 

Taurine also effects Camk ...not sure if it effects just the reading or if its actully doing something to effect the whole system, which in turn knocks dwont cam level

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Hi Buster,

I was just reading your fact list to find updated information on Mycoplasma Pneumonia and antibiotics that work and don't work. Dr. Murphy did blood work on my non-pandas daughter (she was showing some symptoms during recent illness) and her Myco Pneumo titers are high.... surprise! I have an appt for my Pandas son to test his titers. I have never considered this to be a possible cause to his contiued tics that have been so hard to eliminate.

 

Do you have any updated research on the connection to MP and Pandas/Pitands?

 

Thanks,

Shannon

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I think you should add the whole question of probiotics and how gut problems factor in and could actually mask progress with their own symptoms. This could be a key factor in why abx seem to work for a week or two and then there is backsliding.

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