Question re: PANDAS

[justinekno]

Fortunately it was my GP and not the dr that my son and husband see. That dr is totally on board with PANDAS and so I have left a message with his office to see if we can all get the culture.

 

The doctor saying there's no ned for a culture is BS. I'm sorry, but you need a new doctor.

 

I take this personally. My PANDAS son's first exacerbation...he was crazy over night. no signs of strep. The dr did a rapid because she once read about PANDAS and she had no other answers for us except for a psychiatrist eval.. rapid was negative. 2 days later I got a phone call, the culture they did was positive. He had strep.

 

If that culture was never run...God I can't think where we would be right now.

 

My husband. had a sore throat. being that we now knew our son had PANDAS, he went for a strep test. rapid came back negative., They told him there' sno need for a culture. He doesn't have strep. he insisted on the culture. Guess what...came back postive! He had strep.

 

At least you got a prescription for Zith.

[thereishope]

Well, if you're on Zith now, you could get a false negative. You can still get it done, and you may get a +, but be prepared for a negative. Some PANDAS kdis have tested + while on abx, so it is worth doing for them. But if it comes back negative, remind your doctor they are on antibiotics at time of testing so the possibility of a false negative is there.

 

For further reference (and let's hope you never need to refer to this cause that means someone may be sick), still do the rapid, then get a culture if that comes back negative, then do blood tests if the culture comes back negative.

 

I say still do rapids because you will get meds faster if it comes back +. Some doctors (like mine) will not give meds unless they see a +. Waiting 2 days for the culture to come back makes a big difference to a PANDAS child.

[thereishope]

First, this is a great thread about the Cunningham test

 

http://www.latitudes.org/forums/index.php?...gham+blood+test

 

In that thread a different cost is cited. it is now $400 and can deducted as a donation. Insurance will not cover it.

 

Here is a link to Dr Cunningham

 

http://www.oumedicine.com/body.cfm?id=4290&oTopID=4290

 

 

Welcome.

 

It's important to remember that what works for one child, may not work for another. The first step is trying antibiotics to clear the infection. Once the infection is cleared , healing can begin. But antibiotics isn't as easy as it sounds. One has to find the right antibiotic for your child. It seems most on this board have had most success with Zithromax and higher dose Augmentin. I have also heard a handful with Keflex. Some kids may clear on amoxicillan and penicillan, but that's seems to be on oddity/rarity.

 

Here is one article that explains how pen and amox may not clear strep

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Finding the right antibiotic for your child, unfortunately, is a lot of trial and eror.

 

There is also a research study going on that is the closest thig there is to a diagnostic test. It is being done a Dr Cuningham. You send for a kit, have blood drawn, send it back. The results will tell you if your child falls into a PANDAS range. However, one has to remember that it is still in reasearch phase and it currently costs $400 since funding was lost.

 

Something else is that strep for many children is the original trigger, but they then have oterh triggers like viruses, allergies, etc. Also strep can hide in the sinuses, gut, anal strep, and for girls, vaginal strep. So what symptoms that seen to "just be there" w/o going away could actually be caused by hidden strep that the antibiotic did not erradicate. Alos, get all family members tested for strep. Some kids will have PANDAS symptoms surface from exposure only. One does not need to have a fever or sore throat to have strep.

 

Personally, your family history alone would send up red flags for me.

 

can you please post the link to order this test for dr.Cuningham Vickie?

thank you so much

[justinekno]

I don't see any information about the tests on the website for Dr. Cunningham. Is it just a best kept secret? I was curious if she is still offering the tests. Has anyone received a test from her recently?

 

First, this is a great thread about the Cunningham test

 

http://www.latitudes.org/forums/index.php?...gham+blood+test

 

In that thread a different cost is cited. it is now $400 and can deducted as a donation. Insurance will not cover it.

 

Here is a link to Dr Cunningham

 

http://www.oumedicine.com/body.cfm?id=4290&oTopID=4290

 

 

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[thereishope]

You can email her requesting one. Her email appears on the page.