New to all this

[Looking4answers]

Hello Everyone,

My 7 year old over the span of 2 days started exhibiting multiple tics.  We went online and found info about pandas.

She was put onto a 5 day dose of Zithromax and after 4 days was almost tic and symptom free.

After the course the tics returned.

We returned to a pediatrician yesterday and she is still testing positive for strep.

We are now on clavulin (amoxicillin and clavulanate) and after first dose tics seem worst.

Does it usually take some time to see results?

Does anyone on here have any anecdotal advice for us?

worried parents,

 

 

 

[MomWithOCDSon]

So sorry you're going through this, but welcome to the forum.

I'm sure others with more recent experience will chime in, but given your pediatrician's response, I'm wondering if he/she is truly PANDAS-savvy?  Did the doctor tell you why the switch in antibiotics when the Zithromax -- other than not fully eradicating the strep in 5 days -- seemed to be effective?  When you say "tested positive for strep" still, after the Zithromax, was that by a throat swab culture, or was it a blood draw that tested for strep antibodies (titers)?

It may be that the amoxicillin (even with the clavulanic acid -- I'm familiar with that being called Augmentin, but maybe yours is a difference synthicyzation of the same components, or you're outside the USA?) -- isn't the right antibiotic for your kid, or for the strain of strep you're dealing with.

There are some threads at the top of this PANDAS forum -- pinned threads -- that include some basic background on PANDAS including research papers, etc.  It might be worth going through a few of those and sharing them with your doctor.  But in the end, most of us find that a short-term antibiotic course is insufficient for PANDAs and that a longer-term prescription (usually more than 10 days -- 30+ days) is needed.  Unfortunately, depending on your child's immune system and some other factors the researchers are still trying to definitively figure out (genetics, etc.) why some interventions appear most effective for some, and others most effective for others.

I wish you the best!

[Looking4answers]

So sorry you're going through this, but welcome to the forum.

I'm sure others with more recent experience will chime in, but given your pediatrician's response, I'm wondering if he/she is truly PANDAS-savvy? 

 

--no neither Doctor is savvy in PANDAS , at the moment I need to educate myself with the best antibiotic to use, where would I find that info?

Did the doctor tell you why the switch in antibiotics when the Zithromax -- other than not fully eradicating the strep in 5 days -- seemed to be effective?

--we went to another doctor and that doctor swabbed and prescribed amox with clavulin with the theory that if she swabbed positive that the previous antibiotic did not work

 

  When you say "tested positive for strep" still, after the Zithromax, was that by a throat swab culture, or was it a blood draw that tested for strep antibodies (titers)?

--throat swab

It may be that the amoxicillin (even with the clavulanic acid -- I'm familiar with that being called Augmentin, but maybe yours is a difference synthicyzation of the same components, or you're outside the USA?) -- isn't the right antibiotic for your kid, or for the strain of strep you're dealing with.

--I am in canada and it might be too soon to say if the amoxicillin will work because it has only been 2 days

There are some threads at the top of this PANDAS forum -- pinned threads -- that include some basic background on PANDAS including research papers, etc.  It might be worth going through a few of those and sharing them with your doctor. 

--can I get a link to those?

 

But in the end, most of us find that a short-term antibiotic course is insufficient for PANDAs and that a longer-term prescription (usually more than 10 days -- 30+ days) is needed.  Unfortunately, depending on your child's immune system and some other factors the researchers are still trying to definitively figure out (genetics, etc.) why some interventions appear most effective for some, and others most effective for others.

--what defines effectiveness?  What should I expect if it does work?  Are there Doctor's in Ontario canada familiar with this?

I wish you the best!

 

[MomWithOCDSon]

Looking --

There have definitely been Canadian families on the forum over the years (I first came on-line here about 8 years ago), but I'm not sure which, if any, of those are still around.  Most of the PANDAs "specialists" -- either pediatricians or immunologists who have made PANDAs a focus of their practices -- that I'm aware of are here in the U.S.  Some of them offer Skype or phone consultations; you send your kid's medical records to them and then make an appointment.  But those appointments are not, so far as I know, covered by any insurance companies, and they can be quite expensive.

The pinned threads are here:

Everything from doctors forum participants have found who were helpful (there might be a couple from Ontario in there, I'm not sure) to research to other primary topics.

Effectiveness....in the case of PANDAs, we are generally measuring that by our kids' behavioral response, more so than by the standard medical measures.  So, if your daughter's tics begin to fade or subside entirely in the next few days, then it would seem the amox/clav combination you've been given IS effective for her; you're correct that it may take a few days to make a visible impact.  How long is this prescription?  10 days (typical for amox/clav here in the States).

Here's the thing, though.  I'm not a scientist or a doctor, so I'll direct you to the research papers for the specific facts on this, but like I said before, many of us have found that a single, standard course of antibiotics isn't enough for our kids, and that's not always because they continue to test positive for strep in a conventional way (throat swab).  There seems to be something of a "delayed" effect whereby the strep antibodies continue to attack the basal ganglia for a period even after the kid no longer tests positive for strep, after the "active" infection has come and gone.  Hence the "auto-immune" component of the PANDAS/PANs syndrome.  So longer courses of antibiotics and even in some cases other immune-modulating therapies like IVIG, are what get our kids back to "normal."

You might want to consider this publication; it was authored by a mom forum participant with a long and deep history of helping her two children through PANDAS/PANS who also has an impressive ability for digging into and retaining complex research on the topic.  I think that this book will probably give you all the basic information you want/need to have in hand to marshal your daughter through treatment with your doctors in the most succinct, readable form currently available.  You could also spend hours, days, weeks, months reading through topics here on the forum and learn a lot, but who has that kind of time?!

https://latitudes.org/store/should-you-consider-pandas-ebook-pdf

Sorry, but this is such a huge topic, truly, and I have next to no knowledge with regard to your available Canadian resources.  Other than checking out those pinned threads, I would probably just drop "Canada" or "Canadian" into the search box on the forum and see what comes up there.

 

[Looking4answers]

Thank you so much for taking the time to reply.

 I will be looking for a doctor this week that is familiar with this or at least willing to read the papers.

skype sounds like a great option.

i am at least hopeful that the antibiotics will work after 10 days but it is useful to know that it may take a longer duration.

i wish all that read this the best possible outcomes and thank you all for this resource.