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I see that I am green...answer please on abx


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While I read through all of your posts, I see that I am way behind in regards to certain knowledge in regards to Pandas. So question...I have understood that abx is used as a treatment to ridding of an infection, then the symptoms go away..but as I read, it appears that many of you feel that abx controls symptoms as well....can somebody please explain..I get the idea of abx, which my ds is on to prevent and treat an active, but I don't get the implication of why they would work to control symptoms...Unless they shut down the immune system????

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From the explanations I've been given - similar to prophylactic abx for rheumatic fever - ongoing abx can help provide protection from infections entering their bodies causing further flares and cementing the abnormal autoimmune response.

 

Infections have various stages - my dd will flare with 1st stage alone which is basically just being exposed and bugs thinking about setting up shop in the body. For others, flares come with active infections alone. Abx can help be a shield (so to speak) if that treatment works for the individual.

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I also am no expert, but I have a theory that some bacteria can hide inside of the biofilms that the body makes naturally as a defense mechanism. My thoughts are that if an active infection is living inside a biofilm, it may not show up on any sort of culture or rapid test but it is still there reaking havoc on our child's immune system causing a constant flair of child's symptoms. So as time goes by and the long term abx slowly break through the biofilms the bacteria is then released into the system and killed off by the antibiotics at a slower than normal rate. Some children who have had their tonsils removed and cultured have found a lot of biofilms and hidden nasty infections. Also, my sons symptoms have gotten worse at times when he has taken a biofilm buster such as mucinex or Robitussin. I also think that some antibiotics have an antiinflamitory component in them thereby reducing brain inflammation and reducing symptoms over time. Again, I am no expert but just wanted to throw that out there for others to comment.

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As I understand it:

 

1. Antibodies go "rogue" and attack the basal ganglia.

 

2. This attack causes inflammation in the basal ganglia.

 

3. This inflammation causes most the symptoms we see in our pandas kids.

 

4. Certain antibiotics have an anti-inflammatory property which mitigates the symptoms we see: http://www.ncbi.nlm.nih.gov/pubmed/12054075 and http://www.aldf.com/Book_Review_on_Antibiotics_as_inflamatory_agents.pdf

 

ABX are used as anti-inflammatories in our kids since our kids also need prophylactic protection from infections, so the ABX are a two for one treatment instead of just using anti-inflammatories.

Edited by Mayzoo
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Just to chime in here . .

As already noted, the anecdotal evidence (and some research, as well) indicates that ongoing antibiotics may be both anti-inflammatory and helpful in meeting freshly released microbes either due to environmental exposure or the decay of biofilms currently harboring some nasties.

 

Additionally, certain classes of antibiotics (beta-lactams, for instance, such as Augmentin) are also currently being researched for their glutamate-modulating properties, and the clavulanic acid component of Augmentin is also thought to be neuro-protective in certain respects. Since a number of mental conditions and behavior sets are now being tied to excess brain glutamate (including OCD), there's a possibility that the abx add yet another component to treatment and healing by helping modulate glutamate expression in the brain.

Edited by MomWithOCDSon
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Here is a new paper by Dr. Murphy with more details on the anti-inflammatory and neuro immune properties of various antibiotics http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/#R5

 

Also, IMHO many PANDAS kids DO have chronic low grade infections persisting after the typical 10 day course of antibiotics. Perhaps this has to do with their faulty immune systems (immune system is busy attack in basal ganglia instead of strep) and/or their incredible sensitivity to even small amounts of anti genic stimulation (they react to strep in family members as well as non-strep bacterial or viruses). I think in some kids, strep (or other bacteria once pitands sets in) persists within the tonsils or sinuses, or intracellular, or biofilms as Missmom mentioned, where it is hidden from antibiotics (just as Lyme "hides out" in cysts and tissues). Thus, the long term antibiotics may offer some aid as the low grade strep (etc) slowly "comes out" of hiding, continuing to "stir up" the inappropriate immune response. Also, many PANDAS kids do turn out to have chronic Lyme as an underlying trigger, and long term antibiotics are needed for that.

 

PS...

this is what Dr. Murphy said at the 2012 IOCDF meeting

my child is addicted to augmentin" could be due to 1) decreased infections 2) immune modulating role of antibiotics 3) there are trial of clavulate for depression/anxiety 4)glutamate transporter (down arrow)

Edited by EAMom
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While I read through all of your posts, I see that I am way behind in regards to certain knowledge in regards to Pandas. So question...I have understood that abx is used as a treatment to ridding of an infection, then the symptoms go away..but as I read, it appears that many of you feel that abx controls symptoms as well....can somebody please explain..I get the idea of abx, which my ds is on to prevent and treat an active, but I don't get the implication of why they would work to control symptoms...Unless they shut down the immune system????

 

PS I should add that with multiple exacerbations, symptoms tend not to "go away" with just 10 days of antibiotics. It seems that people are finding with the 1st or 2nd episode, a child may "return to baseline" pretty quickly with antibiotics. With repeated exacerbations, something happens to the immune system. The child starts reacting to more than just strep for one thing. The PANDAS becomes chronic (in one magazine, Swedo mentioned that after 3 exacerbations the PANDAS will become chronic). Also, some kids do not get diagnosed for years, when the PANDAS is already chronic. At that point, more aggressive antibiotics (long term, full strength) PLUS treatments like IVIG can be needed to get back to baseline (or closer to baseline).

 

^so that is one big reason to think about long term antibiotics ^^prevent future exacerbations which will be more severe and harder to "control"

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Thanks everyone!!! Very clear and helpful. My ds will be on abx for the next 1 to 2 years. EAmom: Your explanation regarding exacerbations after 2nd episode fit my ds to a TEE!!! The first two episodes, he responded beautifully....3rd & 4th....ugh....Hopefully the recent IVIG has truly done it's magic. I just wish I knew this info out of the box, as I would have insisted on the IVIG after 2nd episode. I understand that Doc was being careful in diagnosis, he wanted to make sure my ds was truly Pandas. However..........

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Yes...by the time we finally learned about PANDAS our dd was quite full-blown (had to be hospitalized for anorexia age 7). In retrospect, we probably missed the first couple of exacerbations (they were more low grade, urinary frequency, anxiety, sensory stuff) and docs always presumed any fever to be viral (docs NEVER did throat cultures when she got a fever)...so I suspect in my dd's case, the untreated strep took its toll and her PANDAS became severe and chronic.

 

I should add that we had to contact over 20 doctors about her anorexia/symptoms before one mentioned "testing her for strep"...this was 5 years ago. Her throat culture was positive as was her sister's (asymptomatic carrier).

 

We plan on keeping her on abs until age 18 (anorexia struck at age 7, she's 13 now). She has had 3 HD IVIG's over the years. She's not 100% but is pretty good, 90%, has friends, does well in school and is a healthy weight. She still has some anxiety and mild OCD that is from PANDAS though.

Edited by EAMom
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