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We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there?

 

My ds does fixate on what ever activity he is interested to the point of obsession. He is using Star Wars as his current coping mechanism to handle his off the charts anxiety that is keeping him home bound out of school, but he does not have OCD rituals like excessive hand washing, etc type things.

 

I guess I am looking for some assurance as I continue to press for this PANDAS diagnosis. My ds did show improvement with 14 days of augmentin. And when he went off the abx the symptoms came back! So he went back on augmentin 5 days later. I am just starting to see improvement now on his 9th day of augmentin. The neurologist said that said that the abx could not alleviate his symptoms because he did not have an active strep infection, and he said even if they did they would only treat the infection. From everything I have read I know this not to be true - that tons of kids have gotten better long after the strep infection was gone.

 

The neurologist did want to test for almost a dozen other autoimmune diseases, and disorders that have chorea and anxiety as a symptom which could be helpful if I have it wrong and he does not have PANDAS. But I am still trusting my instinct and I am still thinking it is PANDAS. I am trying to get our pediatrician to test his dnase and aso again so we can see if anything as changed and also test for mycoplasma, herpes and mono.

 

I would love any feed back from any of you parents who have been in the trenches much longer than me. Thanks!

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The brain inflammation and autoimmune-type reactions of PANS/PANDAS can be caused by infections other than strep. DD13's was caused by a combination of bartonella and babesia which are generally arthropod-borne infections.

 

A negative antidnase does not rule out other types of infection.

 

On the positive side more doctors and specialists are starting to recognise PANDAS, on the negative side few realize the reaction can be produced by other infections.

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The link above about OCD contains the PANDAS symptom scale. Dr. Latimer had me fill that out for both my boys. You can have OCD without the classic hand washing symptom. Obsessional thoughts are certainly a part of it.

 

Moreover, augmentin has an immune modulating benefit. It is not the penicillin part - it is the other ingredient that modulates the immune system. That is why augmentin works (like Azith) even where there is no active strep infection (per Dr Latimer).

 

This doctor may be a top neurologist but he doesn't sound like he knows much about PANDAS.

 

PANDAS symptom scale checker:

 

http://pandasnetwork.org/wp-content/uploads/2012/11/pandas_pans_scale.pdf

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So I have a bit of the opposite. My daughter was diagnosed with PANDAS based on her strep titers. She has OCD and ODD but they did not come on rapidly. So can you have PANDAS if you develop OCD slowly over time? We aren't really sure when it started; we just know that a few anxieties she had here and there became full on OCD in January, and now it is much worse. It seems like the list of things she is afraid of or won't do gets longer every day.

 

She did not respond at all to the first month on Augmentin. She is now on day 3 of Zithro with no change. Fingers are still crossed that it helps but at this point we are just pulling our hair out and living a miserable existence. Her defiance is so bad she won't do the CBT anymore that was actually starting to work for her.

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change neuro. it is not clear how they are threating chorea. long term abx?

the treatment may be the same and the diagnosis may not be all that important. unless your child has a special infection or sensitivity like gluten or mold that would contribute to his psychological and behavior reactions and is not treated by his current abx.

what you say reminds me of our ds -- no blood tests ever came positive and yet his symptoms (kind of autistic, kind of hypper active) go away on abx combo and come back when he stops takeing them.

abx have prophiactic but also antinflammatory properties. some of them, can even cross blood brain barrier.

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OCD can also take the form of sort of a "cognitive OCD," repetitive thoughts/vocalizations, also driven by anxiety, not just physical rituals. Ds15 will ask over and over for reassurance, which is an OCD-like way of trying to "feel just right" (which is hard to maintain w/OCD).

Our CBT works on above with us.

Don't rule out PANS.

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I suspect your son has OCD in ways you do not realize are OCD. I didn't realize my son had OCD. He also has never had strep titers. Turns out it's because he has Lyme disease. If your child does not have strep, look for another infection that is causing PANDAS. It is actually called PANS.

 

Tamar Chansky has an excellent book called Freeing Your Child From Obsessive Compulsive Disorder. That book lead to my realization of exactly what was OCD in my son.

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  • 2 months later...

My daughter didn't have high dnase titers back in 2006 when she freaked out after having strep. It may have been too long by the time we saw those docs. They didn't even believe in Pandas anyway and wanted us to seek psych help. Aholes. But 9 years later we are still battling Pandas (PANS) and her titers are through the roof with this last flare. So, yes you can have Pans/Pandas and show normal titers, possibly due to timing or possibly for some other reason.

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