Ok, new question

[Lori Ann]

I notice that many of you see that your children get better on their own after several weeks. Is this the norm? Also, many have also said that their children get better after a few days to a week on abx. We are waiting for CamK test results, but I am afraid that they will come back negative and we are back to square one with a diagnosis! DS has been raging for a couple of weeks now (took him off azith in July) He is back on 500mg of zith, but no improvement in four days. Am I expecting too much? We have had no relief in months! Does this mean that he does not have PANDAS? It is the ONLY diagnosis that makes total sense, no other disorder fits all his symptoms so well.

[Kayanne]

If he has only been on the azith for 4 days, I would give it a little more time. For us, the improvements from anitbiotics were noticable more towards the end of the 10 day course...for us the best improvement on antibiotics alone was at the end of 10 days of clindamycin -- but when the antibiotics were stopped...within 2 days she was much worse. I've heard that from 2 other parents too.

 

It is a good idea to get your whole family tested/and or cultured for strep -- just try to consider where there could be exposure because that will slow or hinder your son's improvement.

[Fixit]

I notice that many of you see that your children get better on their own after several weeks. Is this the norm? Also, many have also said that their children get better after a few days to a week on abx. We are waiting for CamK test results, but I am afraid that they will come back negative and we are back to square one with a diagnosis! DS has been raging for a couple of weeks now (took him off azith in July) He is back on 500mg of zith, but no improvement in four days. Am I expecting too much? We have had no relief in months! Does this mean that he does not have PANDAS? It is the ONLY diagnosis that makes total sense, no other disorder fits all his symptoms so well.

 

You are the mom and you know your kid. It may take longer than 4 days..some a week, some a month..i've heard rumors of 3 months..don't quote me. But you may need to try a differ abx, as it seems things are a always achanging.

[Lori Ann]

Thanks! We will keep holding our breath and hope that things get better this week! Neuro is back from vacation and dad took time from work to help as I get ready to go back to work (teaching teenagers, no less!) My gut feeling is that he is a carrier and we are dealing with a resistant strain.

[Fixit]

PS..just found an older thread Momocdson brought up..not take azith with calciuam..blocks absorbtion of abx...so that may mean milk too!!!! good for me to as this may be part of problem...

question...does the calcium thing include other abx..ie biaxin, augmentin, amox...

[Worried_Dad]

Hi, Lori Ann:

 

The "classic" PANDAS patient has the sawtooth pattern, with abrupt, explosive exacerbations and slow, uneven healing over weeks or a few months afterward. But - in the real world of PANDAS - it's not that simple or consistent. Our son, like Sammy Maloney in "Saving Sammy," did not improve on his own weeks or months after a flare; things just stayed pretty horrible until we intervened with some major treatment (high-dose abx, steroid burst, IVIG). Dr. T had a really nice chart he presented at the AO conference where he showed that the PANDAS symptom severity patterns are all over the board; some kids show the classic pattern which wanes without intervention, others display more "chronic" symptoms. Nobody really knows why.

 

In our case, we now suspect our son kept getting re-exposed to strep after each treatment. Our entire family recently tested positive for GAS infection via ASO titer, even though none of us had strep throat symptoms or positive cultures. And many parents on this forum have posted that their child's symptoms resurge after abx dose is lowered or discontinued.

 

So hang in there. The resumption of zith may still do the trick, given more time. If not, you may want to try different abx, make sure the rest of your family is clear of strep, and/or test for other infectious agents (Lyme, myco P?).

 

Good luck!

 

 

I notice that many of you see that your children get better on their own after several weeks. Is this the norm? Also, many have also said that their children get better after a few days to a week on abx. We are waiting for CamK test results, but I am afraid that they will come back negative and we are back to square one with a diagnosis! DS has been raging for a couple of weeks now (took him off azith in July) He is back on 500mg of zith, but no improvement in four days. Am I expecting too much? We have had no relief in months! Does this mean that he does not have PANDAS? It is the ONLY diagnosis that makes total sense, no other disorder fits all his symptoms so well.