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Posted

My dd9 has been on zithromax for 9 days now. This is a trial as I have posted before. We have no tests yet proving pandas. She has tics only which I am understanding can take time to go IF abx can help. The doc said give it 2 weeks. Others have help to shed light that it could take a long time. The doc has all of sudden said we could switch to omnicef - now is that because he wants to quiet my nerves by trying something else or that he truly thought we should have seen something by now? Do I give up on zithro this soon? I feel like I just can not make the right decision. I read that zithro seems to work for a lot of people, have not read a lot about omnicef which worries me. THere are times I think that the abx is causing an increase but too hard to tell because her tics are so high right now anyway. We are doing probiotics and curcumin (not a therapeutic dose yet - going slow). Could this be herx? I am just wondering if I am doing more harm than good. Any thoughts???

Posted

What dose of Azith. are you doing? I would give the Azith. at least a month (or even two). A high enough dose is also important.

 

IMO 9 days is way too soon to give up on Azith.

 

Are there other symptoms, or is it strictly tics?

Posted

Have her tics gotten worse since starting the zithromax? If not, then I would give the "antibiotic trial" more time -- upward to one to two months, if that is possible.

 

My daughter takes 150mg of omnicef daily as a preventative against strep. When she was in her last exacerbation, she took 150mg of omnicef twice a day.

 

Zithromax has anti-inflammation and immune-modulation properties, and some families speculate that is why it has helped their children. There is supposed to be "macrolide resistance" (zithromax falls into the macrolide category), so maybe your doctor was okay with a week of it, but anything longer he wants to switch to a cephalosporin antibiotic--which is what omnicef is.

 

There have been cases of resistant strep to macrolides in Pittsburgh, PA and the Ohio Valley -- so if you are from anywhere near there, your doctor may be considering the resistance factor when he suggested the switch.

 

I would ask your doctor why he wants to change it up, perhaps also mention the beneficial properties of zithromax too.

Posted

It took my dd over 30 days on full strength zuthro to respond.

 

My older dd, who had mild pandas longer needed more than antibiotics to see a dramatic improvement.

Posted

What dose of Azith. are you doing? I would give the Azith. at least a month (or even two). A high enough dose is also important.

 

IMO 9 days is way too soon to give up on Azith.

 

Are there other symptoms, or is it strictly tics?

 

 

My dd is on 500 mg once a day. I have heard that it might be too soon but so many have seen improvement quickly that I can't help wondering if it is working or not. Her symptoms are strictly tics - mostly motor and some mild vocals on occasion. She does have anxiety at times but that too is mild.

Posted

Have her tics gotten worse since starting the zithromax? If not, then I would give the "antibiotic trial" more time -- upward to one to two months, if that is possible.

 

My daughter takes 150mg of omnicef daily as a preventative against strep. When she was in her last exacerbation, she took 150mg of omnicef twice a day.

 

Zithromax has anti-inflammation and immune-modulation properties, and some families speculate that is why it has helped their children. There is supposed to be "macrolide resistance" (zithromax falls into the macrolide category), so maybe your doctor was okay with a week of it, but anything longer he wants to switch to a cephalosporin antibiotic--which is what omnicef is.

 

There have been cases of resistant strep to macrolides in Pittsburgh, PA and the Ohio Valley -- so if you are from anywhere near there, your doctor may be considering the resistance factor when he suggested the switch.

 

I would ask your doctor why he wants to change it up, perhaps also mention the beneficial properties of zithromax too.

 

It seems like some days her tics are worse then others they are the same. My dh does not think they are any worse so maybe it is just me. I might be looking for something that is not there. Was your dd ever on zithro? Sounds like Omnicef is working for you. Did you find one better than the other for your child? This exacerbation has been almost 3 months now and school starting is not helping. I am desperate for this to help - but I am also trying not to make a mistake in the process. Thanks

Posted

It took my dd over 30 days on full strength zuthro to respond.

 

My older dd, who had mild pandas longer needed more than antibiotics to see a dramatic improvement.

 

do you mind me asking what more than antibiotics were needed? I am open to suggestions!

Posted

My dd9 has been on zithromax for 9 days now. This is a trial as I have posted before. We have no tests yet proving pandas. She has tics only which I am understanding can take time to go IF abx can help. The doc said give it 2 weeks. Others have help to shed light that it could take a long time. The doc has all of sudden said we could switch to omnicef - now is that because he wants to quiet my nerves by trying something else or that he truly thought we should have seen something by now? Do I give up on zithro this soon? I feel like I just can not make the right decision. I read that zithro seems to work for a lot of people, have not read a lot about omnicef which worries me. THere are times I think that the abx is causing an increase but too hard to tell because her tics are so high right now anyway. We are doing probiotics and curcumin (not a therapeutic dose yet - going slow). Could this be herx? I am just wondering if I am doing more harm than good. Any thoughts???

 

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons....

could be herxing if myco p or other infection(lymes, other)

 

pleeaseee....watch the yeast..from one tic mom to another....

and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper..

(we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone..

Posted

My dd9 has been on zithromax for 9 days now. This is a trial as I have posted before. We have no tests yet proving pandas. She has tics only which I am understanding can take time to go IF abx can help. The doc said give it 2 weeks. Others have help to shed light that it could take a long time. The doc has all of sudden said we could switch to omnicef - now is that because he wants to quiet my nerves by trying something else or that he truly thought we should have seen something by now? Do I give up on zithro this soon? I feel like I just can not make the right decision. I read that zithro seems to work for a lot of people, have not read a lot about omnicef which worries me. THere are times I think that the abx is causing an increase but too hard to tell because her tics are so high right now anyway. We are doing probiotics and curcumin (not a therapeutic dose yet - going slow). Could this be herx? I am just wondering if I am doing more harm than good. Any thoughts???

 

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons....

could be herxing if myco p or other infection(lymes, other)

 

pleeaseee....watch the yeast..from one tic mom to another....

and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper..

(we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone..

what do you do for the yeast? And how would I know it was the problem and not die off from some other bacteria? Our doc gave curcumin but I read most use nystatin or diflucan. What do you mean by taper? Do you mean slowly cut down on the abx? I was told we could just stop. Our doc said if it is die off then it could last 2-3 weeks - does that even if you do not treat it it will go away? I am afraid I may not recognize it as yeast then not go at it the right way.

Posted

My dd9 has been on zithromax for 9 days now. This is a trial as I have posted before. We have no tests yet proving pandas. She has tics only which I am understanding can take time to go IF abx can help. The doc said give it 2 weeks. Others have help to shed light that it could take a long time. The doc has all of sudden said we could switch to omnicef - now is that because he wants to quiet my nerves by trying something else or that he truly thought we should have seen something by now? Do I give up on zithro this soon? I feel like I just can not make the right decision. I read that zithro seems to work for a lot of people, have not read a lot about omnicef which worries me. THere are times I think that the abx is causing an increase but too hard to tell because her tics are so high right now anyway. We are doing probiotics and curcumin (not a therapeutic dose yet - going slow). Could this be herx? I am just wondering if I am doing more harm than good. Any thoughts???

 

you are already on it...try to hold for 30 days...it may not be the right one...but you don't want to think you should have stayed longer....and even if you go off..you may want to revisit zith for various reasons....

could be herxing if myco p or other infection(lymes, other)

 

pleeaseee....watch the yeast..from one tic mom to another....

and as dc said...you may need more than abx...or maybe just a switch ...we needed the taper..

(we are lapseing as of yesterday..could be yeast or allergies)(i am sure it's one of these or maybe the combo.)trying to reel in before to far gone..

what do you do for the yeast? And how would I know it was the problem and not die off from some other bacteria? Our doc gave curcumin but I read most use nystatin or diflucan. What do you mean by taper? Do you mean slowly cut down on the abx? I was told we could just stop. Our doc said if it is die off then it could last 2-3 weeks - does that even if you do not treat it it will go away? I am afraid I may not recognize it as yeast then not go at it the right way.

 

 

ds has to be on diflucan when on aug..and a steroid or vancomyicin....he has been on too many abx through out his life where i wonder if that is our current problem along with allergie....

ds has been on azith now for 5 weeks or so..and maybe have clostridia now....

a taper is prednisone tapered down each week in dosage over the cours of 4 weeks....

it is very hard to seperate all the stuff and how your child reacts vs mine....there are some patterns that cross boards on reactions/healing...but a pattern does not mean that your child may not be different...different reaction to abx/infection/presentation/healing....it is very hard....

Posted

Curcumin for yeast? That's very interesting. I thought it was anti inflammatory? :wacko:

apparently it has antifungal properties in addition to the others. It is strong and I was made aware of possible die off from that too.

Posted

Have her tics gotten worse since starting the zithromax? If not, then I would give the "antibiotic trial" more time -- upward to one to two months, if that is possible.

 

My daughter takes 150mg of omnicef daily as a preventative against strep. When she was in her last exacerbation, she took 150mg of omnicef twice a day.

 

Zithromax has anti-inflammation and immune-modulation properties, and some families speculate that is why it has helped their children. There is supposed to be "macrolide resistance" (zithromax falls into the macrolide category), so maybe your doctor was okay with a week of it, but anything longer he wants to switch to a cephalosporin antibiotic--which is what omnicef is.

 

There have been cases of resistant strep to macrolides in Pittsburgh, PA and the Ohio Valley -- so if you are from anywhere near there, your doctor may be considering the resistance factor when he suggested the switch.

 

I would ask your doctor why he wants to change it up, perhaps also mention the beneficial properties of zithromax too.

 

It seems like some days her tics are worse then others they are the same. My dh does not think they are any worse so maybe it is just me. I might be looking for something that is not there. Was your dd ever on zithro? Sounds like Omnicef is working for you. Did you find one better than the other for your child? This exacerbation has been almost 3 months now and school starting is not helping. I am desperate for this to help - but I am also trying not to make a mistake in the process. Thanks

 

Yes, my daughter took zithromax for about 3 mos last year. Only 100mg a day to prevent strep. The doctor was pretty sure that her strep was cleared by 10 days of clindamycin (300mg 3x/day) that she took a few weeks before she was treated for PANDAS. She was given the clindamycin because she had a positive result on a rapid strep test (for the 4th time), and after that course her 72 hour culture came back negative.

 

I understand your desperation, and your caution. I think you can relax about making a mistake. A couple of months of an antibiotic is probably one of the more conservative approaches. IMHO, it is more conservative than traditional meds used for tics or psych drugs. However, keep up with the probiotics.

 

If your daughter's only symptoms are tics, then I think it may be beneficial to check out the Tourette's Syndrome/Tics forum. There are tons of ideas about supplementation, and learning/dealing with other triggers for tics.

 

If you are dealing with PANDAS, steroids may be a good next step. However steroids can make Tourette's (and Lyme) worse...so really proceed with caution, and rule them out first.

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