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

[Kbossman1]

We've been in the middle of exacerbation since the week of September 15th. The first 10 days of Omnicef didn't seem to work at all. Then we tried Azith, and saw a great change the first couple of days, but then that faded. The dr then put her on Augmentin at my request, but for 4 days while on this medication, the behaviors were worse than ever.....don't know if we didn't give it enough time, but we decided to quit giving it to her (DD7) because she was so upset for 4 days. Then we got the pediatrican to give us another abx, but he insisted that we try Omnicef again. This time by day 5 we noticed a big difference. Unfortunately she only had a prescription for 14 days and after that she was office the meds for a couple of weeks. We saw dramatic improvement within the first 5-6 days, then for a week she was feeling great......then once the Omnicef ended everything came flooding back. I talked our pediatrican into giving her more abx until we get up to see Dr. B in December.....but this time around it doesn't seem to be doing the same trick. Yesterday was day 6.....and the morning was great.....but then the afternoon was far from good. Anyone else experience worse symptoms or rage with Augmentin, or find that Omnicef just takes alot longer to work? They tested her for strep twice last week, and both came back negative, so I'm thinking that we are still having a reaction from the strep that she had in September. Two of my other children had strep then too, and her best friend, all 3 have been rechecked and no longer have the strep....UGH! I'm really hoping that we'll notice a change soon!

[laure]

We also had huge exacerbation with Augmentin,, Within 8 hours of the first dose, Dd9 was wild with contamination fears, hopping on one foot all through the house, crying for hours, unable to touch us, unable to wear shoes. It was horrible. Dr. B took her off immediately and gave her a steroid taper, then upped her zith to 250 twice a day, (she had been on it once a day). He said it was a sign of something, perhaps some type of tick borne illness not showing on our first Quest blood tests. We did Igenex the next day and are just waiting for results.

[Suzan]

My dd did not do well on augmentin and was removed within days. She became confused and listless and felt like she could not breathe (although she was breathing fine). At the time, we did not know she had lyme and in retrospect we realize she could have been herxing. My dd does very well on zithromax and was the best on a higher dose (500mg daily, she is 9 and 80 lbs).

 

HUGS!

 

Susan

[emmalily]

I got much worse on Augmentin 500.

Augmentin 875 was good, but bad side effects.

generic Augmentin 1000 XR works best.

 

The dosing really seems to make a big difference.

[peglem]

Augmentin does a number on my daughter's gut- so worse symptoms.(although not so bad w/ diflucan as well) Omnicef does diddly for her. Zith is her magic bullet, but only at treatment doses.

[EAMom]

They other kids that had strep...how long after finishing were the other kids retested? If they were retested too soon after finishing the abs then the test might have been a false neg.

 

Also, what were they doses of the abs your dd was on?

[formedbrds]

I

Edited January 16, 2011 by formedbrds

[Kbossman1]

EAmom, I'm pretty sure that it was at least a month, all were tested just last week and were still negative. I think that the dose of Augmentin was 600 mg/ twice a day, the Zithromax was heavy too, she took the same amount each day, instead of taking more on day one, but I can't remember what the strength was....and as for Omnicef she is taking 250mg/5ml at 1.5 tps a day. I'm hoping that we'll see the same results eventually, but it is really weird to see that other kids had the same reaction to Augmentin. We are still waiting for the bloodwork, lyme tests results too.

[Stephanie2]

I think I've mentioned this before, but I have seen both of my boys have die-off/herx symptoms on augmentin. Always takes 3-4 days to settle down. turns out they both had clostridia infections at that time and the augmentin was killing clostridia. We now use flagyl for clostridia.

[momcap]

DS7 started Augmentin (500 2x/day) on Wednesday night. Yesterday he growled at me all morning. Same thing in the evening after school. This morning he woke up in pain (hasn't had pain complaints since starting antibiotics in Sept). After the pain let up he was hypomanic with pressured/repetitive speech. He told me the new medicine is making him "coo coo". Then he sang, "I'm coo coo. I'm coo coo. I'm coo coo, coo coo, coo coo" over and over until the bus came. I'm wondering if I should have kept him home from school? Yikes! Is this from Augmentin? I read that clavulanic acid has antidepressant properties. Or, is this some kind of herxing? Whatever it is I DON'T LIKE IT! We haven't seen manic/hypomanic in almost a year. We'll stay the course a bit longer and see what happens. Strange that so many have had negative reactions to augmentin...hmmmm.....

[Kayanne]

This is just my gut feelings about Augmentin. It's been fairly well established (at least on this forum) that amoxicillin doesn't work well against strep...at least not for PANDAS kids. This is probably because of the intra-cellular nature of the strep, but it could also be other factors such as the actual strain of strep or a combination of the PANDAS child's immune system and the strain of strep. But Augmentin is amoxicillin combined with clavulanate acid.

 

Well, I just think that if pen vk, and amox aren't good enough for PANDAS kid's strep, then it isn't a hard reach to assume that Augmentin won't work in some cases too.

 

One quick google of "cehpalosporins and strep" gave me this article at the top:

 

http://www.medicalnewstoday.com/articles/35136.php

 

Anyway, this is just my 2 cents...but in my family I now insist on a cephalosporin...we pass on the penicillin. Of course I realize that what works for us may not work for everyone.

[Johnsmom]

Karen,

 

thanks for sharing your two cents. My 9 yr old ds was treated with a z-pack on only a few occasions. Last year at this time he was treated and after Thanksgiving they were instructed at school to write and color a picture after the holiday break. He made a beautiful detailed picture of a turkey and wrote a nice paragraph about our holiday.

He had IVIG last june, had an incredible two week stint of normalcy, got re-exposed and upped augmentin to 875 twice a day. I'll admit that he had some improvments after the abx increase but we had the option to do a steroid burst and we chose to do that as well. We only saw a tiny blip of improvmement compared to what we saw the first time he had the burst in Spring. (normalcy, just like IVIG)

Anyway, I look back at my notes from last year and see a burst of improvement following this z-pack and other notes that indicate the same pattern with another z-pack. 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.

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

I have read so much on this forum that zithromax can do well for awhile but then things go south.

 

Ann

 

 

This is just my gut feelings about Augmentin. It's been fairly well established (at least on this forum) that amoxicillin doesn't work well against strep...at least not for PANDAS kids. This is probably because of the intra-cellular nature of the strep, but it could also be other factors such as the actual strain of strep or a combination of the PANDAS child's immune system and the strain of strep. But Augmentin is amoxicillin combined with clavulanate acid.

 

Well, I just think that if pen vk, and amox aren't good enough for PANDAS kid's strep, then it isn't a hard reach to assume that Augmentin won't work in some cases too.

 

One quick google of "cehpalosporins and strep" gave me this article at the top:

 

http://www.medicalnewstoday.com/articles/35136.php

 

Anyway, this is just my 2 cents...but in my family I now insist on a cephalosporin...we pass on the penicillin. Of course I realize that what works for us may not work for everyone.

[Johnsmom]

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

[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.

[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.