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We see Dr L on Thursday!

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I didn't see Dr. L (saw Dr. K), so someone else will have to cover if there's anything else specific you should do for the appt with her. But it sounds like you've done a lot! :) I know the nice thing about talking to one of the experts is that they totally get it. They'll ask YOU questions to help them sort thru the info. They can read the symptoms and see PANDAS if it's there. It's really why those of us who suffered thru trying to talk to local docs will scream at newbies to get themselves to an expert asap if they can. You're lucky in that your local ped didn't dismiss PANDAS. I'll be thinking of you & your dd this week and hoping there's good weather for your travels. Hope things clear up for your ds too.

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Hi everyone,


Just wanted to say a quick hello, and give a quick update on us. It's been a HAIRY several weeks--why I seem to have fallen off the face of the earth. But I'm still around and hopefully regularly around again now that the big things that dropped are calming (we had a critically ill babe in our family-not one of mine--who is thankfully now recovering!) and I'm also mostly through a crazy work rush/ deadline.


We have our appointment with Dr L coming up this Thursday, and we're really hoping it will get us moving in some direction-- PANDAS/PITAND or ???. Really we just need to something to move toward or away from, b/c it feels like we've been in a holding pattern for so long and if this isn't it we've got to get going to find it.


I've been preparing for the appointment like mad-- got all the records, dropped an overview of the med history/symptom history into an easy-to-read, chronological table. Been keeping daily charts with symptoms and rating the severity, etc. We saw the ped rheumatologist in our practice, too. He gave us an em wave unit to try with dd for the short term, but the appointment was really to get in and get to know him so when we return from Dr L he can be our in-practice point person for this-- whatever this may be. Other than that, nothing has changed at all. Still in exacerbation. Still at an elevated baseline (say 3 on a scale of 5) with recurrent spikes to the 5 range.


Going through some stuff with my little guy and dietary changes, too. And yesterday he started a blinking tic. Ugh. I think I've figured out some of what he'd been eating that needed to go, but haven't totally hit on what he actually CAN still eat! And who knows, I think at some point it'd be worth bringing him to a PANDAS doc, too, since his ASD symptoms began after a series of URIs...



Anyway, that's all from this front for now. Just felt badly not having made a peep for so long and wanted to check in and let you all know I'm back :)


We do not see Dr. L either, but I only hear good things about her! I will be keeping my fingers crossed that you get some answers either way. You might want to do a quick vidoetape of the eye tick while it is there - just in case you successfully reduce it by Thursday!


Sounds like you are very organized. It will help you make the best use of your time. I'll be watching for your post later!

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