Guest guest Posted March 4, 2010 Report Share Posted March 4, 2010 AWWW!! I am sorry your little one is having so much trouble. I will keep her in my prayers!! Hugs!!      BYrd http://www.caringbridge.org/visit/deanabyrd http://www.facebook.com/group php?v=app_2373072738 & ref=mf & gid=319594432909#!/group php?v=wall & ref=mf & gid=319594432909 _____________________________________________________________________________ _____________________ -- clinic visit Ok so clinic was grand. Weight was up 1 lb. but we'll take it. Macey answered the majority of the questions herself about symptoms and such. Definitely working on taking on more responsibility for her diseases. Toe infection is no better so will have to return to the podiatrist tomorrow to have the wound opened and drained. If too bad then he will leave it open and pack it and recheck on Monday. If still nasty then she will get a PICC line and IV antibiotics. Still haven't heard from the interviewer at NIH. Immunologist said that she discussed with GI and Remicade will start after the toe infection is cleared If the PICC has to go in then it will stay in and be used for the first dose of Remicade. So if toe pinks up next week we should do first infusion by the end of the week. Labs were a CBC and Chem 14 and finally they all decided a genetic panel needed to be done. It will take about 6 weeks to get back and it has a panel of about 200 things and a few specific things the doc is looking for. Talked to the doc about the hair falling out and she said to keep an eye on it but as the gut improves the nutrition will and her hair should do better Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: http://groups. com/group//messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2010 Report Share Posted March 4, 2010 Ursula, I must have missed what you're waiting on NIH about. Just curious since our kids are going there week after next for a week's worth of testing to study the link between mito and GSD. Are you thinking of taking Macey there? Mom to 4 kiddos, 3 with mito which is causing other issues such as GSD and immune deficiency From: [mailto: ] On Behalf Of Ursula Holleman Sent: Wednesday, March 03, 2010 10:13 PM Pedpid Subject: clinic visit Ok so clinic was grand. Weight was up 1 lb. but we'll take it. Macey answered the majority of the questions herself about symptoms and such. Definitely working on taking on more responsibility for her diseases. Toe infection is no better so will have to return to the podiatrist tomorrow to have the wound opened and drained. If too bad then he will leave it open and pack it and recheck on Monday. If still nasty then she will get a PICC line and IV antibiotics. Still haven't heard from the interviewer at NIH. Immunologist said that she discussed with GI and Remicade will start after the toe infection is cleared. If the PICC has to go in then it will stay in and be used for the first dose of Remicade. So if toe pinks up next week we should do first infusion by the end of the week. Labs were a CBC and Chem 14 and finally they all decided a genetic panel needed to be done. It will take about 6 weeks to get back and it has a panel of about 200 things and a few specific things the doc is looking for. Talked to the doc about the hair falling out and she said to keep an eye on it but as the gut improves the nutrition will and her hair should do better Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2010 Report Share Posted March 4, 2010 Macey has been referred for a study. We are waiting on the interviewer to call to verify she does qualify. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Hobbs <hobbsfamily@...> Sent: Thu, March 4, 2010 10:26:14 AM Subject: RE: clinic visit Ursula, I must have missed what you're waiting on NIH about. Just curious since our kids are going there week after next for a week's worth of testing to study the link between mito and GSD. Are you thinking of taking Macey there? Mom to 4 kiddos, 3 with mito which is causing other issues such as GSD and immune deficiency From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Ursula Holleman Sent: Wednesday, March 03, 2010 10:13 PM Pedpidgroups (DOT) com Subject: clinic visit Ok so clinic was grand. Weight was up 1 lb. but we'll take it. Macey answered the majority of the questions herself about symptoms and such. Definitely working on taking on more responsibility for her diseases. Toe infection is no better so will have to return to the podiatrist tomorrow to have the wound opened and drained. If too bad then he will leave it open and pack it and recheck on Monday. If still nasty then she will get a PICC line and IV antibiotics. Still haven't heard from the interviewer at NIH. Immunologist said that she discussed with GI and Remicade will start after the toe infection is cleared. If the PICC has to go in then it will stay in and be used for the first dose of Remicade. So if toe pinks up next week we should do first infusion by the end of the week. Labs were a CBC and Chem 14 and finally they all decided a genetic panel needed to be done. It will take about 6 weeks to get back and it has a panel of about 200 things and a few specific things the doc is looking for. Talked to the doc about the hair falling out and she said to keep an eye on it but as the gut improves the nutrition will and her hair should do better Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
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