PANDAS - azithromycin

[dut]

Hello

 

Just thought I'd put this link out there for those using zithromax for PANDAS or considering its use.

 

http://jpet.aspetjournals.org/cgi/content/abstract/292/1/156

 

It's the abstract from a paper that looks at the level of immunomodulatory effects of 4 macrolides. Looks as though zith comes low down compared to others, especially roxithromycin. I dunno enough about the science to comment tho'.

 

Thanks

[Pudgeo]

Thanks for the info..has anyone ever used any of these other meds?? Maybe Dr's use azith because it's more commonly used? Sarah

[peglem]

roxithromicin, according to wikipedia, is not available in the US. Clarithromicin seems to have a high side affect profile, including the dreaded Stevens-Johnson Syndrome. Erythromicin is high risk for gastrointestinal problems....So it appears to me that zithro is probably the safest of the macrolids. My daughter is on zithromax and it does worry me. She takes it for 5 days straight and then 7 days off. Currently we see symptoms return on days 6&7 of her off times. But that is improving. I think when I see several cycles where days 6&7 do not exhibit symptoms, I will try to discontinue the zith.

[emma1]

We went off zith and back on PenVK because my doctor was extremely concerned about the long term use of zith (she was on it about 3-4 months I think). At first, the antibiotic was amazing (symptoms off the antibiotic were through the roof; on the antibiotic, the symptoms were minimal). I am now wondering if the antibiotic is affecting symptoms -- we did not see an increase when I went back to PenVK.

 

So my question is: Would you keep your child on suppressive antibiotic therapy to prevent re-infection with strep?

[P_Mom]

Emma,

Absolutely....once strep hits again, the whole cycle begins again, plus, being on the antibiotics helps to keep symptoms milder when they do have an increase.

[peglem]

So my question is: Would you keep your child on suppressive antibiotic therapy to prevent re-infection with strep?

 

I sure would like my daughter's immune system to be strong enough to fight it off for herself. I don't like her being on the antibiotic long term, only do it because we don't seem to have another solution right now. I hate constantly fighting yeast problems as a result. My feeling is that I would trial going off the antibiotic if there is indication that she doesn't need it. If symptoms come back, we can go back on it.

[P_Mom]

Emma,

The thought occurred to me yesterday about your daughter's age...she is 16, correct? Anyway, at that age, teens are considered less vunerable to strep, so, the antibiotics as prophylaxis at this age needs to be carefully considered. I immediately thought of my kids, and, being they are young and venerable to strep, prophylaxis was highly recommended for them, even though the antibiotics are not needed at this point to control symptoms, (thank the Lord), they will stay on the prophylaxis through puberty. After that, they are considered less "at risk', although when I get to that point, I just don't know what I'll do..it will make me nervous to take them off, but, at that point, you just really need to weigh everything and be very diligent about strep. When my kids are older, I'll most likely just do a couple weeks of antibiotics if there should be an increase of symptoms. I guess what I am trying to say is that at this point and at your daughters age, the prophylactic antibiotics, well, I don't think anyone can give you a clear answer on that...go with your heart.

 

Kelly

[P_Mom]

Emma,

A couple more things...since your daughter is back on Pen Vk, that is a good thing, IMO. If she is doing well on it, no need to go to another antibiotic. Pen VK is the most basic antibiotic, with very few side effects (unless your child is allergic, of course), and it is a very narrow spectrum antibiotic. Yeast issues occur MOSTLY with broad spectrum antibiotics (Zith, Omnicef, etc), as they are effective on many, many bacterias etc. where Penicillin is not. PANDAS children do not have a problem with their immune systems not being strong enough, in fact, it is just the opposite...their immune systems are quite strong and over active. My son had an immuno essay done to check his immune system, IGG, IGA, IGM, etc. Their is a wide range as to what is considered normal, and, although he was not out of range, all classes of antibodies were on the very high end....indicating a very strong immune system....not even close to any kind of deficiency......this is a common PANDAS finding.

 

Take care and I hope this helps.

 

Kelly