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Heading to NIMH for IVIG Study Sunday - HELP!


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My DD (7 years old) was recently diagnosed at Rothman (2 weeks ago) with PANDAS stemming from strep in September 2012. Went to Rothman 2 weeks ago and finally managed to pry her lab results out of them. I was given almost no information about her evaluation as Dr. Murphy is aware that my DD has been accepted for evaluation at NIMH for their IVIG study beginning on Sunday. I just finished poring over her lab results and they indicate LYME and MYCOPLASMA values as HIGH. My DD is currently taking Azythromycin 625 ml 1x/day for 14 days due to HIGH strep titers.

Dr. Murphy sent her results to NIMH and they accepted us on the basis of my information, medical records and her evaluation.

 

My question is this: It seems ridiculous that my DD not only had strep resulting in PANDAS 2 weeks later, but, that she also has Lyme AND Mycoplasma Pneumonia! All three are known to cause PANDAS. What are the odds?

 

AND... if my DD does have Walking Pneumonia... couldn't that be the reason for her constant cough, rather than it being a tic/Tourette's based in PANDAS and should be treated as such???? and BEFORE we do the NIMH study?

My DD also has all of the symptoms for PANDAS to varying degree except for bed-wetting. Otherwise, she has everything else including heavy family history of auto-immune diseases.

Should I be concerned about sorting this out, or, go forward and see if we are accepted into the study on Monday and do the IVIG/Placebo if offered?

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I think it is best to treat underlying infection before Ivig. The Azithromycin might cover the mycoplasma as well as the strep however if it doesn't then switching to biaxin or minocin would be better. For Lyme, combination of abx is what LLMD usually treat with. Our Lyme doctor didn't think it was a bad thing to have Ivig, thought it is good to help fight infection and build up immune system. Others seem to think otherwise. It's a difficult decision I hope someone else can offer you better advice.

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I think it is best to treat underlying infection before Ivig. The Azithromycin might cover the mycoplasma as well as the strep however if it doesn't then switching to biaxin or minocin would be better. For Lyme, combination of abx is what LLMD usually treat with. Our Lyme doctor didn't think it was a bad thing to have Ivig, thought it is good to help fight infection and build up immune system. Others seem to think otherwise. It's a difficult decision I hope someone else can offer you better advice.

 

Thanks. I finally got word back from Rothman today that my DD does not have active Lyme or Mycoplasma, but, that she was exposed previously. I wonder how much having those in her system worked with the strep to start the onset of the PANDAS? Hmmmmm..... ??

In any case, at least now I know that her cough is tic/Tourette's and PANDAS based and should be resolved by IVIg if we get the treatment. Thank you again. I am hanging on by my fingernails waiting to go to Bethesda and praying we get some treatment. Until we do, my DD is not allowed to take anything and she is in pretty bad shape. One of her OCD's is being obsessed with not sleeping so we are up ALL night in my house and I am still trying to work and raise 7 year old twins alone. :( I could deal with the rest of it if only I could get some sleep. Zzzzzzzzzz.....

Some nights she stays up until 6:30 or 7:30 a.m.

Fingers crossed for study acceptance and IVIG.

Thank you.

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Fingers crossed tight for you!!! And my 2 cents worth, although I do not know much about Lyme, is do not pass up the IVIG. It is what brought my dd10 back from the depths of nonfunctioning and was the beginning of her truly healing. For us it was not overnight fix of everything, but writhing movements stopped after 2nd day infusion, then tics within a few qeeks all gone. OCD and other symptoms are taking a bit more work but progress is being made. IVIG also was not covered by insurance most of the time so I say do not pass it up.

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Are you allowed to give melatonin and/or L-tryptophan? It may take a good dose to "knock out" a pandas kid at night when she is trying to do rituals. It does help to get some sleep into her and you. You may have to give it secretly or say it is a vitamin. Pandas children don't want to take something that will make them fall asleep while doing rituals. Good luck in Bethesda!

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