nicklemama Posted November 26, 2012 Report Share Posted November 26, 2012 Well friends, the pneumonia DS8 was diagnosed with three weeks ago caused an exacerbation. DS just fell apart. The raging anger came back full force and he has a minor eye tic going on. He's obsessed w/ a computer game. Must play this game. You know the drill. We got no where w/ the ped. She would not run titers to see if he had mycoP. Urgent care gave him a zpack and I got nothing from the ped. After 3 yrs of PANDAS w/ DS, you'd think she would have read something or bothered to learn a little about PANDAS. We are moving on. Anyway, we are headed to Chicago on Wed. DS has his second IVIG on Thurs and Fri. Fingers crossed this works. He is 18 months post his first IVIG. Link to comment Share on other sites More sharing options...
mama2alex Posted November 26, 2012 Report Share Posted November 26, 2012 So sorry to hear this! I was hoping he'd come through the pneumonia without any problems. Did they end up just giving him the one Z-Pack? I can't get it out of my mind that our doctor said a Z-pack isn't enough for pneumonia. The pneumonia they gave our ds the Z-pack is when he had is first PANDAS episode, although we didn't know what it was until a few years later. I'm sorry too that your ped isn't helping you. Sounds like you plan to leave her practice, and that makes sense. We recently did the same thing for similar reasons. Prayers for a safe trip and successful treatment this week! Link to comment Share on other sites More sharing options...
nicklemama Posted November 26, 2012 Author Report Share Posted November 26, 2012 We are leaving the practice. Yes, he was rx'd just the one zpack at urgent care. I took him in for follow up and she would not draw for strep/mycoP titers and no more abx. I happened to have two weeks worth of azith and gave that to him. Otherwise, who knows if he would have gotten over it. He has. He is left w/ PANDAS exacerbation and a trip to Chicago for another IVIG. I have to find a doc who will help us. Its not easy here in MI. We basically have no one. Link to comment Share on other sites More sharing options...
kos_mom Posted November 26, 2012 Report Share Posted November 26, 2012 Nicklemama, Everything is so much easier when you have a pediatrician in your corner. All I can suggest is calling up every pediatric practice within a reasonable distance to see if you can find anyone willing to work with you. We are fortunate to have a pediatrician who, while not knowlegeable, is willing to work with us. Both my kids had a flare starting the same day post IVIG and he tested both for ASO, antiDnase B, and myco IGG and IGM. He also gave my DS a zpack. My DD got tested but was unwilling to wait to see the doctor to get the Zpack. She no longer wants to see the pediatrician because she is 19--finding an adult doctor who will cooperate is even harder! So frustrating when this pediatrician is so willing, so close, and has an in-office lab. Ko's Mom Link to comment Share on other sites More sharing options...
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