Tonsillectomy & PANDAS

[EAMom]

Dawn...from Buster's Oct. 5 2008 post. Does this help? Kaplan's 2005 paper discusses intracellular strep and how pennicillin can't get at it. Keflex is better at getting intracellular strep but Azithromycin is the best. Are the mucoid shield's something different from the strep going intracellular? (but also can be penetrated by Azith.)

 

Also, the article "Amoxicillin Failure in Strep Throat" that Colleenrn just posted is yet another reason why amoxicillin doesn't always work. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Best summary papers on Azithromycin vs Penicillin as treatment

 

There also hasn't been a followup to Swedo's azith vs pen study -- which seems incredible given the efficacy of both pen and azith. Swedo even comments that they had expected azithromycin to be a control in her study and hadn't expected it to work as well as the penicillin. There are several studies on certain strains of strep being able to go intracellular (i.e, where penicillin can't reach). Kaplan wrote an excellent paper on the efficacy of macrolides on getting intracellular strep in 2005 http://www.journals.uchicago.edu/doi/pdf/10.1086/508773.

 

At the same time there are numerous papers on resistance by strep (GABHS) to macrolides. For example,

http://www.journals.uchicago.edu/doi/pdf/10.1086/432480

and

http://www.journals.uchicago.edu/doi/abs/10.1086/320745

 

So it is a bit of a hit/miss. If penicillin can reach the strep, then it remains the preferred bactericidal option; however, many doctors prefer Augmentin or Cephalosporins (e.g. Keflex) as these have higher clinical efficacy.

[boysrlove24]

Does anyone have any information on whether T & A will have an impact on strep carriers? Our ped recommended that our younger dd (non-PANDAS we assume) have her tonsils out, might make her less likely to be a strep carrier. Her tonsils are normally a bit big. She doesn't tend to get any symptoms with strep, but will test positive (appears to clear after a course of Azith.). I think she gets reinfected from school. She tested positive in October and again in December.

 

Our PANDAS dd does react when her sister is positive.

[boysrlove24]

Hi eamom - it's been years since you put up this post so you likely will not get this message from me...but can you tell me what ended up happening with your carrier daughter? My son is exactly the same as your DD he shows no symptoms but tests positive and keeps impacting my older DS who is PANS/Lyme positive. Would love to hear how your girls are now 6 or so years later. Thanks!

[bigmighty]

DS had been in remission for quite some time when Dr K highly recommended that he have his tonsils out prior to starting college. He had them removed this past March, was on antibiotics and steroids for months afterwards. Strep and Mycoplasma were found on the tonsils. Anyway, he ended up getting mycoplasmic pneumonia and was sick for months including significant flair of most of his PANDAS symptoms. Ended up on bactrim since this past May. He is now away at college and can only keep his symptoms under control with the bactrim. Every time he either stops or switches to augmentin, his ocd returns in full along with inability to eat or make eye contact.

 

Our feelings are mixed. On the one hand, there was clearly stuff trapped in his tonsils that was not good and now it's working its way out of his system. On the other hand, our goal in having his tonsils removed was to get him in a better position before beginning college and, at least for the short- and mid-range term, we inadvertently made things worse.

 

Dr K thinks the only thing we can do is have IVIG, but we are hesitant.