Anyone ever seen a worsening of PANDAS symptoms with Augmentin, but be

[momcap]

Can everyone on this topic post where they are from? I have heard that Zithromax does not work on the east coast but works well in California.

 

I am from the midwest, Wisconsin.

 

I'm just curious to see if that comment holds water.

 

thanks

Ann

 

 

We're in Southwestern Ontario. My kids have been on zithro many times for ear infections and sinus infections. More than once we have had to do a second course of it, or change antibiotics to clear an active infection. It doesn't seem to work well for us.

[Kayanne]

How did you come to find out about the cephalosporins? Your doctor suggested?

In 2009, we had a difficult time clearing the strep from myself and my children. The pediatric practice that I take my kids to has 6 doctors...we saw several of them, and the antibiotics that were prescribed also varied. After finally insisting to the "main" pediatrician that I take my kids to (for well visits) that he perform a culture and sensitivity test to determine which antibiotic is most effective against this strain of strep. He answered that he didn't think the local hospital does such a test, and anyway it doesn't really matter because all cephalosporins kill strep.

 

He rambled on about a seminar he went to, and that as a last resort, we would need to try clindamycin--which we eventually did do. I didn't understand any of it...at the time. But now it is significant to me because it means that when my kids get strep, he is on board with skipping the penicillins.

 

Can everyone on this topic post where they are from? I have heard that Zithromax does not work on the east coast but works well in California.

 

I am from the midwest, Wisconsin.

 

I'm just curious to see if that comment holds water.

I am from PA. There have been documented cases of macrolide resistant strep in Pittsburgh and Ohio Valley. Zithromax is a macrolide, not a cephalosporin. I found some studies that show resistance to erthyromycin and biaxin, but not a mention of zithromax...however, I think that the idea is that if one antibiotic in that class has resistant strep, then all of them have the potential to have strains of strep resistant to it--I would love it if someone could clarify this for me.

 

I want to add that your statement above is very general...I think there are many cases in the east where zithromax has worked...the resistance just needs to be a factor to consider when deciding which antibiotic to put your child on, and it should be on the back of your mind if your child suddenly has a spike in PANDAS symptoms.

 

We were under the care of a DAN doctor who did not do any long term abx.

My son has never had elevated ANTI DNASE but has elevated ASO'S all the time. I was told that elevated ASO's means intra - cellular strep.

 

1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there.

 

2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs.

I completely agree with EAMom about long-term, full-strength anitibiotcs. IMHO, a child should be on them until symptom free. Then dropped to a prophylaxis dose...if there is no backsliding, then I think it is safe to assume that the exacerbation is over.

 

As far as getting worse on zithromax after a while, I also think that is an over-generalization. One thing to really consider is that your son's case is unique, as is the case of every child who suffers from post infectious autoimmunity...and the worsening of symptoms many times doesn't have anything to do with the antibiotic, but rather re-exposure to strep or new exposure to mycoplasma or a virus. Sadly, it is a maze that many of us parents are left to navigate on our own. Also, you need to consider what types of things are going to happen on zithromax if this is really a case of lyme...herxing. Finally, you need to consider that not all of these kids guts are going to do well on zithromax...so what is excessive yeast or an overgrowth of a different bacteria going to do to their behavior.

 

Cases vary a lot from child to child -- especially the longer exacerbations and/or untreated cases.

[EAMom]

We were under the care of a DAN doctor who did not do any long term abx.

My son has never had elevated ANTI DNASE but has elevated ASO'S all the time. I was told that elevated ASO's means intra - cellular strep.

 

 

 

1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there.

 

2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs.

 

That person did not give a reference. Maybe I will ask??? So you say if it is hiding intracellular then ds would be less likely to have elevated ASO's ? I dont understand any of it. When you say low titers, how low? DS had one test where his ASO's were only 163 at a range of 150 being the highest. He was bonkers at that time. When they were the highest 661, he had spiked a fever for two days and then after the fever broke he couldnt walk!

 

UGH! This research is just too slow.

 

Hmmm. I don't really remember what it was initially. But it was definitely in the low/ below normal range, despite positive cultures. After dd had been on abs for about a year (Azith.), her ASO was 17, while her CaM kinase ll (at the same time) was in the high PANDAS range.

[Johnsmom]

We were under the care of a DAN doctor who did not do any long term abx.

My son has never had elevated ANTI DNASE but has elevated ASO'S all the time. I was told that elevated ASO's means intra - cellular strep.

 

 

 

1) IMO long term full-strength abs are really important for PANDAS kids (at least most of them). My dd (now 5th grade) has been on (at least) 250mg/day Azith. for 2.5 years. I wouldn't expect much in terms of response/sustained improvement from just a z-pack here and there.

 

2) Hmmm. I have not heard that b-4 about ASO/intracellular strep. I would think almost the opposite, if the strep is hiding intracellular, the body would be less likely to have elevated ASO's. ?? Did that person have a reference? Many PANDAS kids have low titers (mine did) yet I suspect she may have (had?) intracellular strep as she responded better to Azith. than other abs.

 

That person did not give a reference. Maybe I will ask??? So you say if it is hiding intracellular then ds would be less likely to have elevated ASO's ? I dont understand any of it. When you say low titers, how low? DS had one test where his ASO's were only 163 at a range of 150 being the highest. He was bonkers at that time. When they were the highest 661, he had spiked a fever for two days and then after the fever broke he couldnt walk!

 

UGH! This research is just too slow.

 

Hmmm. I don't really remember what it was initially. But it was definitely in the low/ below normal range, despite positive cultures. After dd had been on abs for about a year (Azith.), her ASO was 17, while her CaM kinase ll (at the same time) was in the high PANDAS range.

 

 

DS only tested positive on one throat culture and thats when he complained of a sore throat. We only did one or two other throat cultures and those were negative.