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Zithromax really not working that well


Jv83
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Hi this is my first post. Will be sharing our story soon but I was wondering if any advanced members could tell me why I hear zithromax works so well for many yet we are on a full treatment dose everyday for less than two months and it is barely getting my dd by. We are still seeing many symptoms..handwriting issues, she stops talking, wanders around aimlessly, asks the same question over and over..is there school? And compulsive toy play. Previously she was on amoxicillin which was terrific but stopped working after two months and before that bicillin shots which worked but too many needles...she is only 4. Any advice is greatly appreciated. This jv

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Jv83-

 

It may be helpful if you share your daughter's story. Was she strep triggered? triggered by another illness? what type of testing have you done? how long has she had pandas?

 

In our experience, with my two pandas daughters, antibiotics have not been the magic bullet. Initially, both remitted symptoms with about 30 days of full strength zithromax. But, after that, they would relapse due to another trigger (illness, strep exposure, loose teeth, T&A surgery, etc). At that point, antibiotics really did nothing- we had to move to some type of immune modulating (or dampening) type of treatment. For us this usually means some type of steroids.

 

After three years of dealing with pandas in two previously healthy and "normal" kids, we have found that we don't need to go "above and beyond" a normal protocol for treating illness (ie strep throat), or even in searching for a trigger (though sometimes we still do bloodwork with a flare up of symptoms- and find nothing)-- we find that we need to quickly and aggressively administer inflammation control.

 

If you have done appropriate testing for different bacteria/ illness: strep, mycoplasma pneumonia, etc and for immune system deficiencies- I would discuss with your doc the possibility of trying a steroid burst.

 

In the meantime, you could try regular dosing with advil (as you would for fever) for 3 to 5 days to see if there is improvement.

 

Most of us on the forum also give probiotics to help keep the gut healthy while on antibiotics.

 

Also a GREAT psych experienced with ERP (exposure and response therapy) for OCD is like gold, if you can find one....

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When DS15 was dx'd age five, we had previously tried amoxy (got worse) penicillin and augmentin (temporary improvement, spiraled back down rabbit hole), azith (slight improvement, but ped would not go long term). By then he was a mess. An infectious disease doc prescribed rifampin & clindamycin combination for a month--worked like a charm. He remains on azith prophylaxis. For break through infections, he only needs 10-day clindamycin & rifampin. Studies show they are two of the most effective oral ABX (each used alone) for resistant group A strep and other bacterial infections. Combination is a powerhouse. I like that symptoms subside fast and he does not have to be on months of high dose ABX. Your mileage may vary, but might be worth a try. Good luck!

Edited by boychildsmom
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HI JV83-----I cannot speak to your exact case without any history. But there are videos with answers to your question about azithromycin and pandas on the following link.

 

http://www.thedoctorsvideos.com/search/?search_id=pandas&search_type=search_videos&submit=+

 

All I can tell you is that you are in the right spot. When our dd came down with tics last Dec 2010, I googled what causes tics in kids and found Pandas right from the get go, which has been a tremendous help to start learning about it. Reading these post, and I recommend going back thru older posts, has been invaluable along with your own research. It will help you feel validated that you are doing the right thing and mitigate the feeling that your all alone.

 

As for the treatment protocol, I can only assume your seeing a pandas literate doc. If not, get to one. We got nowhere in the regular medical world regarding our situation. As for our treatment protocol, my dd's were not as bad as some on this forum. DD7 been battling this for at least 1-2 years prior to first tic. DD8 since June 2011. Our Integrative Pediatrician has prescribed Azithromycin for 10 days, Cod liver Oil with vitamin D, Multivitamin called Foundation, Probiotics while on the abx, vitamin b6, primrose oil, and a natural anti-inflammatory called Enhansa which is big in the Autism world from what I have heard. So far so good. We did have a setback a couple weeks back where day fever of 100 degrees and the emotional lability and tics came back with a vengeance, worse than ever. Then started Azithromycin......with very fast remission of tic and lability. Some minor tic and lability still remain. DD7 has been sick so long, we really don't know what her perfect baseline would be. If you need or want any other info, just Private message me and I can supply all the supplements and help in any way.

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Hi this is my first post. Will be sharing our story soon but I was wondering if any advanced members could tell me why I hear zithromax works so well for many yet we are on a full treatment dose everyday for less than two months and it is barely getting my dd by. We are still seeing many symptoms..handwriting issues, she stops talking, wanders around aimlessly, asks the same question over and over..is there school? And compulsive toy play. Previously she was on amoxicillin which was terrific but stopped working after two months and before that bicillin shots which worked but too many needles...she is only 4. Any advice is greatly appreciated. This jv

 

re Azith: how many mg/day is she getting and how much does she weigh?

 

have you throat cultured family members? My pandas dd never really got better until we cleared her assymptomatic sister (a carrier).

 

re Clindamycin, the liquid version tastes REALLY bad!

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The first time Sandra got Clarithromycin (macrolid abx often used for Myco-P) was in the autumn when she started symptoms in May and the Myco-P was clearly visible in March-April. That one week doze did almost the entire job (we followed up a few weeks later with 60 mg Prednisone for a week) - after which she was totally back to herself for a whole year.

When the condition returned full flare in the following autumn she did not react to short abx or steroids and not to 3 months of steroids but did react greatly to IVIG. We did not know then about long term abx. Unfortunately her IVIG was stopped half way and the condition returned once more following an upper respiratory tract infection and ear infection.

About 1.5 years later (during which we tried psychiatric medication that wracked havoc making her totally psychotic) we started Azith 500mg/day and are still going on with it nowadays - more than 2 years later. She is not yet well but the difference is amazing and the general direction (although we do experience backslides and bad days) is positive.

It took a long time before Azith effect started really showing marked changes in symptoms - and her IgG to Myco-P followed the trend. 50% down in the first 3 months and the other half down to the lower of positive in another 6 months. In those she turned from a totally bedridden psychotic to partially functional to the point that she can do things around the house, read a bit, sometime even (on good days) practice karate and play the piano (gut pain at a certain same spot which seems to be the area where the small int. meets the large one are still present and so are bouts of pulling her hair, getting "stuck", far more limited ticks than what we were used to, etc.), walk the dogs in our yard and on very special days around our small crescent, she no longer needs sb to walk her by the hand, no longer have me tied by a rope to her.She need not be told to eat.

What I am trying to say is that one must be PATIENT, very patient. There are no miracles in this affair.

In any case, based on our 7th year experience, I now know that I should never react hastily, not listen to doctors who know less than me but speak without thinking about issues they are not familiar with and that abx really works for her. Additionally she takes Glycine and NAC (Solgar) and B-vit. She is on no psychiatric medication.

I have accepted the fact that my life mission is helping her get to the best functional state possible - and this decision has made it far easier for me to last this time. I learnt to see the good times and treat the bad ones, and keep her spirit high - she is going to be 22 in 2 weeks. Has been ill for 6-7 years and still believes she will get better and functional enough to go back to school some day (not being able to attend, she left school in the middle of the 10th grade). I do a good deal of daily cognitive practicing with her, not telling that is what I am doing but even washing the dishes or handling the laundry or cooking and baking (in which she likes taking part) are a manner of improving things as I give her small tasks and responsibility (but make sure the stress level is not overwhelming her) and keep the spirit high. Every time she manages to do something well she is rewarded emotionally and learns to reward herself. Every time she fails she is told it is OK and that it will only get better. No angry reactions or crying over such matters is supported. She learns to concentrate only on the positive points and moments of the day - and that too helps. If she is asking to use the PC for reading and doing dictionary work (we are still on the first Agatha Christie book we started almost a year ago) I reward her for taking the initiative (meaning I need not tell her to do so!). But the main issue for parents is PATIENCE. Flow with the process, support it, and ACCEPT that it is what it is while NEVER give up hope and instill that in your patient. And a good piece of reading is a book by Dr Groopman called "The Anatomy of Hope", which does help in figuring that no matter how bad a situation is, one should never give up hope which is based on realistic thinking.

 

Give Azith time to work and look for the small changes. The chance is that the big ones will only be a sum of the small ones.

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Thanks for your responses. Her history is..had done some bloodwork in December 2010 for another doctor as my daughter has immune issues with yeast, bacteria and other developmental delays One of the tests was Aso and at the time I had no idea what that was..it came back 133. About two months later my daughter came down with Scarlett fever. We gave her a bicillin shot and she improved..she started talking much more, and her fine motor skills improved..we were amazed. About a month later I noticed my dd doing some weird thing with her cup..moving it to edge of table. At this point I had done some research on strep and came across pandas and the meaning of Aso. The thing is she must have had a strep infectio. At some point before SF that went untreated...thats why she had positive ASO. Based on what I read I took her to pediatrician and asked for swab..she was positive. We gave her another shot..but the results only lasted so long, rages started happening but she never has had another positive culture again..just ASO rise..the highest has been 233 and behavior are indicators..she is currently on zithromax 200 mg daily and she is 36 lbs.. Before that we were on amoxicillin for two months. We have been treating with abx for about 8 months total. We have not tested for Lyme, but mycoplasma p. Showed on a recent stool test. We have never cultured ourselves as we never have sore throat so never thought of that. I do know she has high IGG and high viral markers. Her pandas symptoms are rage, increase in scripting language as opposed to regular talking, compulsion with her dolls..making them all sleep, had extreme anxiety at first..cant be alone, not wanting to go to school, and bowel issues, increased tactile sensitivity as well..there are other that are more transient but those are the main ones. Worrieddadandmom, I will PM you..thanks for sharing. Thanks everyone Im taking it all in..JV

Edited by Jv83
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Scareltt Fever IS strep - it is just the term used when you have strep throat that presents with a rash. So, she had a confirmed strep infection if you received the diagnosis of scarlet fever.

 

"mycoplasma p. Showed on a recent stool test" - you should look into this an Lyme. Mycoplasma - can be hard to detect and hard to get rid of. It is also known to be a co-infection to Lyme (doesn't have to be tho).

 

 

If you have indications that she has a current infection of mycoplasma - that alone is enough to trigger pandas. From my years on the forum and our personal experience - until you get rid of any and all underlying chronic infections, you will not fully recover. She needs whatever it takes to get her immune system healthy enough to fight off the mycoplasma and strep that are probably both still present.

 

At this point, if I were you I would do a few things (and probably more) but at the least -

1)start tracking her mycoplasma IgG via blood tests to see if going up/down

2)Get her on antibiotics specific to mycoplasma. Axith does not work for most people - usually a high does of doxycycline or minocycline for several MONTHS (consider Doryx - if doxy gives your child stomach upset which is common with Doxycycline) because of the strep you know she has had and recated to, you may consider doing one of these in conjunction with something that is more strep specific.

3) If she does not have considerable improvement with more targeted antibiotics, I would consider IVIG or PEX. I'd give the antibiotics several months. (probably take you that long to line up a doctor to give you IVIG anyway)

4) I'd get some Lyme testing / evaluation by an LLMD done.

5) I'd see if anyone is a carrier per EAMoms post.

6)I'd try to get her on some natural anti-inflamatories (supplements, DIET) and try some advil (not long term/but on bad days to see if it helps at all)

 

She had scarlett fever and strep, but she also has underlying infection. The IVIG would clear up the auto-antibodies that were triggered by the scarlett fever (strep). but you've still got to treat the underlying infection if the IVIG does not clear that (which it may clear some infections, but in our experience it did nothing for mycoplasma)

 

Pandas usually fairly quickly becomes PITAND - your child reacts to colds and other things besides strep. So, your child does not need strep in the environment to become symptomatic. And immune response to a cold (that they may not even come down with) can trigger the auto-antibodies.

 

Chonic infections WILL mess up your child's immune system. And the most important thing that should be at the top of the list above is - I'd see a pandas specialist and or an immunologist that is "pandas- friendly" to get immune panel and other immune tests done (if you haven't already). If your child is immune defecient, then it may be an indicator that you may want to consider IVIG. Your child is very young, but if it is a clear case of pandas and some immune problems as well (which is common) I'd be on the aggressive side if you have several months of the antibiotics not responding.

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The first time Sandra got Clarithromycin (macrolid abx often used for Myco-P) was in the autumn when she started symptoms in May and the Myco-P was clearly visible in March-April. That one week doze did almost the entire job (we followed up a few weeks later with 60 mg Prednisone for a week) - after which she was totally back to herself for a whole year.

When the condition returned full flare in the following autumn she did not react to short abx or steroids and not to 3 months of steroids but did react greatly to IVIG. We did not know then about long term abx. Unfortunately her IVIG was stopped half way and the condition returned once more following an upper respiratory tract infection and ear infection.

About 1.5 years later (during which we tried psychiatric medication that wracked havoc making her totally psychotic) we started Azith 500mg/day and are still going on with it nowadays - more than 2 years later. She is not yet well but the difference is amazing and the general direction (although we do experience backslides and bad days) is positive.

It took a long time before Azith effect started really showing marked changes in symptoms - and her IgG to Myco-P followed the trend. 50% down in the first 3 months and the other half down to the lower of positive in another 6 months. In those she turned from a totally bedridden psychotic to partially functional to the point that she can do things around the house, read a bit, sometime even (on good days) practice karate and play the piano (gut pain at a certain same spot which seems to be the area where the small int. meets the large one are still present and so are bouts of pulling her hair, getting "stuck", far more limited ticks than what we were used to, etc.), walk the dogs in our yard and on very special days around our small crescent, she no longer needs sb to walk her by the hand, no longer have me tied by a rope to her.She need not be told to eat.

What I am trying to say is that one must be PATIENT, very patient. There are no miracles in this affair.

In any case, based on our 7th year experience, I now know that I should never react hastily, not listen to doctors who know less than me but speak without thinking about issues they are not familiar with and that abx really works for her. Additionally she takes Glycine and NAC (Solgar) and B-vit. She is on no psychiatric medication.

I have accepted the fact that my life mission is helping her get to the best functional state possible - and this decision has made it far easier for me to last this time. I learnt to see the good times and treat the bad ones, and keep her spirit high - she is going to be 22 in 2 weeks. Has been ill for 6-7 years and still believes she will get better and functional enough to go back to school some day (not being able to attend, she left school in the middle of the 10th grade). I do a good deal of daily cognitive practicing with her, not telling that is what I am doing but even washing the dishes or handling the laundry or cooking and baking (in which she likes taking part) are a manner of improving things as I give her small tasks and responsibility (but make sure the stress level is not overwhelming her) and keep the spirit high. Every time she manages to do something well she is rewarded emotionally and learns to reward herself. Every time she fails she is told it is OK and that it will only get better. No angry reactions or crying over such matters is supported. She learns to concentrate only on the positive points and moments of the day - and that too helps. If she is asking to use the PC for reading and doing dictionary work (we are still on the first Agatha Christie book we started almost a year ago) I reward her for taking the initiative (meaning I need not tell her to do so!). But the main issue for parents is PATIENCE. Flow with the process, support it, and ACCEPT that it is what it is while NEVER give up hope and instill that in your patient. And a good piece of reading is a book by Dr Groopman called "The Anatomy of Hope", which does help in figuring that no matter how bad a situation is, one should never give up hope which is based on realistic thinking.

 

Give Azith time to work and look for the small changes. The chance is that the big ones will only be a sum of the small ones.

 

If your daughter was 100% functional after steroids, why settle for the quality of life she has now? Why not pursue IVIG again or steroids? Why not consider other possible avenues of treatment like brain stimulation??

Edited by LaurenK
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Scareltt Fever IS strep - it is just the term used when you have strep throat that presents with a rash. So, she had a confirmed strep infection if you received the diagnosis of scarlet fever.

 

"mycoplasma p. Showed on a recent stool test" - you should look into this an Lyme. Mycoplasma - can be hard to detect and hard to get rid of. It is also known to be a co-infection to Lyme (doesn't have to be tho).

 

 

If you have indications that she has a current infection of mycoplasma - that alone is enough to trigger pandas. From my years on the forum and our personal experience - until you get rid of any and all underlying chronic infections, you will not fully recover. She needs whatever it takes to get her immune system healthy enough to fight off the mycoplasma and strep that are probably both still present.

 

At this point, if I were you I would do a few things (and probably more) but at the least -

1)start tracking her mycoplasma IgG via blood tests to see if going up/down

2)Get her on antibiotics specific to mycoplasma. Axith does not work for most people - usually a high does of doxycycline or minocycline for several MONTHS (consider Doryx - if doxy gives your child stomach upset which is common with Doxycycline) because of the strep you know she has had and recated to, you may consider doing one of these in conjunction with something that is more strep specific.

3) If she does not have considerable improvement with more targeted antibiotics, I would consider IVIG or PEX. I'd give the antibiotics several months. (probably take you that long to line up a doctor to give you IVIG anyway)

4) I'd get some Lyme testing / evaluation by an LLMD done.

5) I'd see if anyone is a carrier per EAMoms post.

6)I'd try to get her on some natural anti-inflamatories (supplements, DIET) and try some advil (not long term/but on bad days to see if it helps at all)

 

She had scarlett fever and strep, but she also has underlying infection. The IVIG would clear up the auto-antibodies that were triggered by the scarlett fever (strep). but you've still got to treat the underlying infection if the IVIG does not clear that (which it may clear some infections, but in our experience it did nothing for mycoplasma)

 

Pandas usually fairly quickly becomes PITAND - your child reacts to colds and other things besides strep. So, your child does not need strep in the environment to become symptomatic. And immune response to a cold (that they may not even come down with) can trigger the auto-antibodies.

 

Chonic infections WILL mess up your child's immune system. And the most important thing that should be at the top of the list above is - I'd see a pandas specialist and or an immunologist that is "pandas- friendly" to get immune panel and other immune tests done (if you haven't already). If your child is immune defecient, then it may be an indicator that you may want to consider IVIG. Your child is very young, but if it is a clear case of pandas and some immune problems as well (which is common) I'd be on the aggressive side if you have several months of the antibiotics not responding.

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Norcalmom, thank you so much for the very sound advice. I need to look at myco and test for lyme. My dd also tested positive for h pylori..so the fun never ends. She has great improvements on antibiotic...the best I've ever seen her but the results have waned with another illness..or in case of amox and bicillin just became ineffective. She has big fungal issues, viral issues as well so we have many things at play. I am going to get in touch with dr. T and do his bloodwork and see where we stand...if I need a llmd..I will certainly come here first for some expertise..:)...all I can say is thank god for this message board...very supportive, welcoming, and understanding. This jv

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