No one will diagnose my daughter! Please Help!

[T_Mom]

I wanted to comment on getting a culture for Strep A and non A, as LisaM mentined.

 

If you just get a regular throat culture, it usually just looks for strep A. If you get an upper respiratory culture, it tests for all strep AND other pathogens (one is mycoplasma pneumonia which can trigger PANDAS). I think it is a good idea to always do upper respiratory cultures on PANDAS children. The swab is done the same way, it is just grown out diffrently. It gives you a lot more information.

Colleen

 

 

Hi Colleen, Is that what you ask for an "upper respiratory culture" ?

I have seen 48 to 72 hour cultures mentioned...Should we be requesting one over the other? Is there a difference?

 

Thanks so much--

[AmySLP]

I have always been worried about rheumatic fever with my children b/c they have had strep SO many times. That is how I "discovered" PANDAS. After my daughter had strep 4 times in a few months when she was in Kindergarten, I was researching rheumatic fever and found PANDAS. I have also been told by a doctor that rheumatic fever no longer exists, which is completely false. It does exists and is even on the rise.

 

To those who have seen Dr. Latimer and been advised to rule out any cardiac involvement, I am very curious what tests were done? An echo? I want to rule out any cardiac involvement, especially with my 12 year old who had long periods of untreated strep b/c we did not know about PANDAS at the time and she did not have physical symptoms to have me know to take her for cultures.

 

ANY info about testing for cardiac involvemernt would be greatly appreciated. I am wondering how to get it covered by insurance. Do you think just based on number of strep episodes and a positive family history of rheumatic fever would be enough? She has had horrible joint pains from time to time when she has had strep.

 

Thanks!

Colleen

 

 

 

Colleen,

We saw Dr. Hougan (pediatric cardiologist in Arlington, Va). He did an ECHO and ultrasound. His report indicated hx. of strep and recent PANDAS dx., as well as the recurrent c/o leg pains. I think these support the reason for cardiac assessment which should justify payment by insurance.

 

Hope this is helpful,

Amy

 

 

http://emedicine.medscape.com/article/808945-overview

 

Disease prevalence in the United States is a function of socioeconomic status, with higher frequency in areas of crowding. The United States had experienced a resurgence of rheumatic fever in the last 2 decades, with many of the reported cases involving persons in upper socioeconomic groups. The reason for this disparity is unclear but may be caused by the emergence of more virulent strains of group A streptococci. The overall incidence has been declining in developed nations but is still rampant in less developed ones.

 

The incidence is low in most parts of the country but is variable. In a study published in 2006, Martin and Barbadora showed that the disease remains a problem in western Pennsylvania with 121 new cases from 1994-2003.1 Consistent with earlier reports, most patients were children and most had carditis.

 

ARF is common among American Samoans in Hawaii.2

[colleenrn]

TMom-

Yes. Ask for an upper respiratory culture and try to get them to run it for 72 hours. Some drs offices/labs say "we don't do 72 hours", but in reality they can and will if the physician orders it and you are assertive that you are paying for it and want it grown out that extra day. It was Dr. Swedo who told me to always insist it be grown out for 72 hours, but, of course, the NIMH web site does not reflect that.

 

AmySLP,

Thank you for the cardiac info!

Colleen