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Beginning our PANDAS journey. Advice please


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My daughter has just been diagnosed with PANDAS and I originally was just happy to get a diagnosis as we have been unable to figure out her constant abdominal pain, moodiness, tics etc for the past four months.   

We live in Colorado and on Monday, I have to start making decisions on how to choose a doctor, how aggressive to be and understanding this disease more.   

Her PCP has her cephalaxin and she is not getting any better.  Have any of you had experience with some abx working and others not?  Has anyone else had their child experience cyclical vomiting (roughly 3-4 weeks apart)?  

Is there anything that she can take while we are waiting to see someone? Echinacea etc?

Does anyone have direct experience with any PANDAS doctor's in Colorado?

I am feeling a bit lost and pretty scared as my daughter threw up again this morning and the abx do not seem to be working.

Any tips or words of advice for us.   

Thanks!

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Ibuprofen (aka advil, motrin) is for some (not all) a "resuce med" in a flare (you can't keep giving it indefinitely).

It is definitely the case that some abx work and others not, and it varies from kid to kid and (likely?) by particular sickness for a child..

Haven't had the vomiting experience, but have had our fair share of mystery stomach aches.

I have no experience with Colorado docs - am far away.

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We definitely experienced some antibiotics that didn’t seem to help—when my son was first diagnosed this past August, his pediatrician put him on 14 days of Amoxicillin—this barely helped. Then an infectious disease specialist that our pediatrician sent us to tried Zithromax, then Doxycycline, and finally a combo of Keflex/Rifampicin. None of these really helped. Meanwhile I had gotten an appointment with a Pandas specialist who prescribed Biaxcin for a month and then he added in Augmentin for 2 weeks. This helped with bringing the strep down, but not the mycoplasma. After that he prescribed a month of Clindamycin with ten days of Rifampicin, too. It’s been 5 months—my son is back to school and while he still has some anxiety and OCD his titers have gone down and he’s about 65-70% back to himself. Life is far from perfect and I wonder if some of these behaviors/changes will now be permanent, but I’ll take what we’ve got now over him sobbing and howling in a corner of the living room and unable to attend school or really even talk to people. I’m so sorry your daughter and you/your family are going through this. I had no idea that Pandas even existed before last August and my heart goes out to you. You will find the right help for her and she will get better.

Oh, and my son didn’t throw up, but did complain of stomach aches daily—it might have been the 5 months of various antibiotics destroying everything or anxiety or both.

Anyway, hang in there.

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