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PANS?


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Unfortunately, I don't cannot answer any of your questions. Our dd8 presented with much the same symptoms and we were turned down by Yale study. Their reason was not enough classical OCD symptoms. We are in a limbo, doctors who treat PANDAS/PANS don't consider our dd a bad enough case and most other doctors would treat her only if she her labs are not normal. I am not sure what our options are and would, actually, ask you to let us on the forum know what you have done. best wishes

 

 

PR40- What PANDAS doctors have you seen that turned you away? They think it's not PANDAS/PANS? Has she been on antibiotics?

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Mycoplasma pneumonia and bartonella are 2 infections that I can think of that cause the kinds of symptoms your dd is having. My DS has the both, and the rages can be just awful.

 

I would highly recommend that you check for the mycoplasma pneumonia (an atypical walking pneumonia.) Keep in mind that even if the IgM (active infection) is low, but the IgG (denotes that there has been infection, but does NOT indicate whether it is active or past, despite what many doctors believe) is high, does not indicate that she doesn't have it. Even if she had it in the past, she may still be reacting to it (like my son, particularly when reexposed.) Also, I would recommend that you have everyone in the family checked, as well, because it turned out that I was the culprit (my IgM was extremely high!)

 

Also, keep in mind that mycoP can be a co-infection of lyme.

 

If you PM me, I will send you the name of a LLMD in your area who we use. And, I do know of one person that I was sure had lyme based on her symptoms, that I referred to him, and he found something different, so he doesn't always dx lyme, but can look for other reasons for your dd's symptoms.

 

At the least, though, in the meantime, I would ask your dr. to do a blood test (IgM and IgG) for mycoplasma pneumonia.

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Yale study had turned us down. We haven't yet been able to see any of the individual doctors (Drs. B,K, L etc.) because of our insurance. A psychiatrist at Children's Hospital in Boston suggested Prozak, much like your dd was recommended Zoloft. Dr. Torres (associated with what he calls Boston PANDAS group) would treat her with antibiotics but only if her blood results were not normal as would another neurologist from Children's Hospital as would our PCP. We could not see Dr. Geller but in his private practice. and so on.

Dr. K read our daughter's brief history and suggested that this might be PANDAS but no we did not have her yet diagnosed with PANDAS by a competent doctor. She has been on antibiotics three times for 10 days but not on PANDAS abx regiment.

 

There are perhaps two significant differences between yours and our dd cases: 1) our dd had strep two months prior to the first onset of symptoms (and took abx for strep right away) and 2) she presented with restless leg syndrome-like leg problems which are, now 8 months later, gone for the most part.

otherwise, the two cases seem remarkably similar, esp. chewing, dressing, remarkable improvement after meals,

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FWIW, NIH wouldn't take my daughter for the study becuase she did not have documented history of strep :( I do have to say, as I'm looking back on old emails (I haven't been able to copy and review her medical records so I'm going by old emails wehre I mentioned my kids being sick), I can't help but wonder if some of her past coxsackie diagnoses may have actually been strep. She only ever had sores in her mouth (never hands or feet or even outside her mouth) and they never did a strep culture when diagnosing coxsackie. In any event, coxsackie seems to be a trigger, but can't help but wonder what was missed and when given I'm hitting so many walls without the strep diagnosis!

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Hi Hayley,

your dd sounds like text-book pandas...

 

Re titers: you want to draw titers at onset of behavior change, and then 6-8 weeks later...per Swedo, a 2 fold rise in titers is significant. (The problem is, in reality, most people don't know to draw strep titers the day their child startes to go crazy.)

 

Many (PANDAS and non-pandas) kids never get elevated (or rising) titers despite positive cultures.

 

Also, girls are less likely to have elevated strep titers.

 

My dd never had elevated titers, even with positive cultures (and her sister positive on the rapid) and OCD x2mo (severe enought to require hosp). Anyway, the bottom line is: "Trying to use titers to see if someone has been infected with strep is not very useful."--Dr. Sue Swedo, IOCDF conf. 2012

 

I would

1) throat culture all family members to check for carriers (it is REALLY important to get strep out of the household)

2) try to get daily Azith. while waiting to see Dr. L.

3) give advil to help with symptoms while waiting to see Dr. L.

4) see if you can get a doc to check for other infections (as the other parents have recommended) while waiting to see Dr. L.

Edited by EAMom
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