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Posted

Hi,

I am fairly new to the forum so if this question has been answered before I apologize. My son is 9 years old and about 1 year ago he started rolling his eyes, we did not think any thing of it, then he started clearing his throat all the time, that was then replaced with jerking his head and rolling eyes. We went to the neurologist --I had researched a fair amount and at the time brought up the topic of PANDAS which she quickly dismissed, he was started on Clonindine at that was that. However, the more research I did on my own on the topic the more educated I became and I really feel there is an allergic/enviromental component. Last week he some labs drawn strept titers, Lymes titers and some other electrolytes and a throat culture. His pediatrician called today and said he was positive for strept. He has had a increase in tics over the last couple weeks. She put him om Amoixicillin for 10 days. He surely meets the criteria for PANDAS but it has been a year since this all started. I am not sure what I should be doing next.? Any insight would be appreciated.

 

Deanna

Posted

Hi Deana,

 

So the culture was positive?

 

I don't know if a 10 day course of Amoxcillin will clear him.

 

Has he had any sore/throat fever lately? If not, he's probably been culture positive for a while (could be even a year) and he may be a carrier (carriers can get PANDAS). Or, if he has been ticking more the past couple of weeks, it is possible this is a new infection.

 

I would do a another throat culture a week after the last antibiotic dose is given. If that is negative, check again in 3-4 weeks.

 

If he doesn't clear on Amoxcillin, I would recommend Azith. That is what cleared our (non-pandas) carrier dd.

 

A lot of PANDAS kids are on long term prophylactic antibiotics, but I doubt you will be able to convince your doctor of that at this point.

 

Keep us updated. With my dd, tics took longer (6 weeks) to clear than her other symptoms (OCD, tantrums, anorexia took only 2 weeks. However, many kids improve much faster.

 

Change his toothbrush and toothpaste a couple days into the abs. I would also check the other family members for strep (they may be carriers who could re-infect or cause an immune response in your son.) Also, don't let him share toothpaste with others.

Posted

Hi ,

thanks for the quick reply no sore throat or fever--should I have the doctor change his antibiotic now or just wait??? I was kinda surprised when the doc called and said he was positive. His pediatrician is pretty good about listening and looking into things and taking suggestions. Neurologist not so good. Thanks for the insight.

 

Deanna

Posted

One more questions when rechecked should it just be throat culture of blood levels as well??

 

 

Thanks again!!!

 

Deanna

Posted

Just do the throat culture, not the blood.

 

Re Blood titers (ASO/d-nase b ): Titers can take a long time to go down in some kids, even if strep infection is gone. If your son doesn't mind being poked for a blood draw, you could recheck blood in 2 mo. ( or longer) if you are curious. Read Buster's Aug and Jan posts: http://www.latitudes.org/forums/index.php?...art=#entry29305 Titers really aren't that critical if you have a positive culture. Where they are important is if you don't have a positive culture and are looking for evidence of a past strep infection.

 

Yes, neurologists don't seem to have a very good track record on the PANDAS forum! Most don't seem to believe in PANDAS. They either say, "do nothing about the tics" or want to rx lots of tic/pscyh. drugs...but they don't bother to do throat cultures!! They'll do an MRI before they do a simple throat culture.

 

Good question about changing the abs...your could go either way. It's up to your doctor and you. Amoxcillin might clear his strep. Is he good about taking the meds? My younger dd (non-pandas) hates taking any meds so for her I would switch straight to the Azith. Also, if the tics are really interfering with his life functioning, I would go straight to the Azith.

Posted

Hi,

How long was your daughter on the antibiotic? I am not sure if he should just finish the 10 day course or be on longer???--I will speak to the neurologist today but you know how that usually goes.

 

Deanna

Posted

My non-pandas strep carrier dd has always cleared with 5 days of Azithromycin (she tests neg several weeks after treatment, but does get reinfected from school...this school year she was positive in Oct. and again in Dec.).

 

If 10 days of Amoxcillin doesn't clear your son, I wouldn't bother with doing more Amoxcillin. I would just switch to Azithromycin. Azith (a marcolide) gets intracellular strep (better than Keflex or other cephalosporins) and much better than amoxicillin. (That said, there are some kids that respond better to Keflex than Azith.) For my PANDAS dd, Azith. was the 4th antibiotic we tried, the only one that really helped her. Amoxcillin didn't do anything.

 

Article on amoxcillin failure in strep throat: http://www.entrepreneur.com/tradejournals/.../169459644.html

 

From one of Buster's posts:

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.

 

My PANDAS dd (55 pounds now) has been on Azithromycin 250mg daily since June 08. Her PANDAS episode (4-5 mo. long) was pretty horrific (including hospitalization for anorexia nervosa, suicidal statements, severe OCD, psychotic behavior) so we did not want to risk a repeat by taking her off the Azithromycin. This week (after 9months of Azith) we are finally decreasing that to 125mg/day. We are also investigating IVIG so eventually we can further decrease the Azith. or switch to a different antibiotic.

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