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More confused after the dr. appt

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Hello!!! Quick update on Isaiah, he is doing very well since his round of ABX, however after the past couple of days I have noticed some of his behaviors returning, they appear to be more mild, but I am seeing them. We saw the pediatrician Tuesday for a follow up since his diagnosis and being on ABX. I was hoping for some more answers at that appt, but did not get any. The dr. told me that we will just wait for symptoms to return, and he would test for strep (he believes it is only strep that causes relapses) then IF he is positive for strep, he can treat with ABX again, if this continues to happen (which it will, I am assuming with PANDAS) then he could refer us to Infectious Disease. However at this time, there is nothing more that we need to do. I was also under the impression that he would want to recheck his ASO titers, since the only one that was done was with his last infection and was very elevated, I thought getting a "baseline" might be good. I suppose if I pushed for it he would've ordered it, but I wasn't sure what to do, I was in shock, he told me that I know more about PANDAS than he does, which I appreciate the honesty, but frankly it scares the crap out of me. I am lost...I don't know where to go or what to do? Is it normal to just lay idle until another episode hits? He said he would be willing to refer us to Seattle to some specialists down the road if I would like. Should I ask for that now? Should I be asking for certain testing, dr's, ect?? Any help would be appreciated. I just hate to wait until it happens again. Thank you so much.



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Hi Tiffany,


I definatly wouldn't wait to be referred to infectious disease. We just saw the head of infectious disease at Childrens Mem. in Chicago, and he told me my kids need psychiatric help. Even after I told him three other peds. diagnosed PANDAS, and showed him all the bloodwork.

I might push for the specialists in Seattle (if he knows they understand PANDAS), or look for another PANDAS doc that you would be able to go to for abx./further testing.

It will prob. take a while to get in anyway, so at least if you make the apt. you could try to get some other tests run in the mean time.


My Dr. is similar to yours. She said the same thing about me knowing more, which doesn't suprise me since ALL I do is research PANDAS, treatments, etc. online :) She also said we would just wait it out, and treat the symptoms/strep when they returned.....but she doesn't feel comfortable with prophalactic abx.


Our problem was of course the symptoms are here (although better after abx.), but we aren't showing strep at the moment. We are going in to check titers tomorrow. My son also had Mycoplasma, which I had to push him to be tested for. The ped. was suprised when it came back pos.

I feel like it's so hard to tell if there's something going on, or if symptoms are just lingering for a while.


I'm not sure what other tests your son has had, but we also consult with Dr. T, and he did a full immune panel work up to make sure everything was ok.

We also checked for Lyme.

So, we have a Dr. that we can turn to for IVIG, a Dr. for prophalactic abx. if we need, and our ped. in the middle of it all.

It drives me crazy that they can't all be in one place, or all take insurance....the bills are adding up fast.


And I almost forgot, I would log EVERYTHING. I do, and bring it to every apt. It's been a huge help for me, as well as the doctors.


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