Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Nick was infused last week and we started at 15 cc/hr and gradually moved up to 40 cc/hr. He did great this time, no fever, crying, tiredness or anything. Good Luck Conan! Amy, mom to , 23 months, CVID, asthma, GERD, on prophalatic abx (rotating Septra and Amoxicillin) and IVIG (Carimune NF) every 4 weeks, flovent, xopenex, albuterol and claritin. Allergic to milk, soy and latex.. among other things. Visit Nick's Caringbridge site at http://www3.caringbridge.org/ne/nicholasb/ going for 3rd IVIG > > > Hi , I hope this goes better than the last, any suggestions as to > what rate to ask for... it took 2 hr to infuse him last time.. he > does fine through the infusion but is sick for a week afterward.. > kathleen mom to conan 23 months > > > > > > > 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: > /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 kathleen - remind me again, any premeds and how much is he getting (grams)? Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Kathleen. Our daughter had a terrible reaction (developed aseptic meningitis) after her first infusion and the subsequent ones were not that much better (anxiety, migraines, nausea, etc. for 2-4 days)--even with her premeds. Then, we switched to Gamunex and gave her 5cc, then 10cc, up to 30 cc max. She does great now. No side effects at all! And, no premeds! trowlake <kkrt1@...> wrote: Hi , I hope this goes better than the last, any suggestions as to what rate to ask for... it took 2 hr to infuse him last time.. he does fine through the infusion but is sick for a week afterward.. kathleen mom to conan 23 months 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: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 well all is good for right now, I am sure I am in for a long night... we have ben scoped twice, but unfortunaltely on elemental diets.. we also had menegitis, non IVIG related... they just told me about a new pro-biotic to help conan you order it thorough a special lab... I don't know what it costs yet, but it is a non food based pro-biotic. Dr P has my biopsy slides... my GI said this crap of tolerating no food and vomiting every night can last till he's 5 .... I don't think so.......... there is not a lot of info out there.. we do not have reflux, I am so sick of hearing that.... it is like the word virus or colic. which means I really have no clue... we go back to GI tommorrow, to see the chief of GI.... maybe a new approach or perspective....... Re: going for 3rd IVIG Kathleen. Our daughter had a terrible reaction (developed aseptic meningitis) after her first infusion and the subsequent ones were not that much better (anxiety, migraines, nausea, etc. for 2-4 days)--even with her premeds. Then, we switched to Gamunex and gave her 5cc, then 10cc, up to 30 cc max. She does great now. No side effects at all! And, no premeds! trowlake <kkrt1@...<mailto:kkrt1@...>> wrote: Hi , I hope this goes better than the last, any suggestions as to what rate to ask for... it took 2 hr to infuse him last time.. he does fine through the infusion but is sick for a week afterward.. kathleen mom to conan 23 months 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 -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Kathleen, Rebekah is infused with 12.5 grams over 5 hours. She starts off at a very slow rate that is increased to 50 mL/hour and we use a 5% solution. This is a rather slow infusion, but she has had a lot of trouble with side effects. Not that our rate is the " right " rate, but it will give you something to compare against. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 Rebekah has CVID and ?? going for 3rd IVIG Hi , I hope this goes better than the last, any suggestions as to what rate to ask for... it took 2 hr to infuse him last time.. he does fine through the infusion but is sick for a week afterward.. kathleen mom to conan 23 months 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: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Kathleen- You are doing so much for Conan and I know it can be so terribly frustrating and exhausting. I can completely relate to some of the things you describe. I know a few parents that have found help with Dr. Putnam...and I just put a call into his nurse today to talk about possibilities too. Please let us know how your appt goes with the Chief of GI...when you have time to exhale. Your little guy is such a trooper. (mom to la, various immune deficits and gut problems) Trow <kkrt1@...> wrote: well all is good for right now, I am sure I am in for a long night... we have ben scoped twice, but unfortunaltely on elemental diets.. we also had menegitis, non IVIG related... they just told me about a new pro-biotic to help conan you order it thorough a special lab... I don't know what it costs yet, but it is a non food based pro-biotic. Dr P has my biopsy slides... my GI said this crap of tolerating no food and vomiting every night can last till he's 5 .... I don't think so.......... there is not a lot of info out there.. we do not have reflux, I am so sick of hearing that.... it is like the word virus or colic. which means I really have no clue... we go back to GI tommorrow, to see the chief of GI.... maybe a new approach or perspective....... Re: going for 3rd IVIG Kathleen. Our daughter had a terrible reaction (developed aseptic meningitis) after her first infusion and the subsequent ones were not that much better (anxiety, migraines, nausea, etc. for 2-4 days)--even with her premeds. Then, we switched to Gamunex and gave her 5cc, then 10cc, up to 30 cc max. She does great now. No side effects at all! And, no premeds! trowlake <kkrt1@...<mailto:kkrt1@...>> wrote: Hi , I hope this goes better than the last, any suggestions as to what rate to ask for... it took 2 hr to infuse him last time.. he does fine through the infusion but is sick for a week afterward.. kathleen mom to conan 23 months 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 -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Yes, frustrating, and annoying.. I am a psychologist, and for me to be frazzled is a bit much... I will pick their brain today.. I will be home and try to call you.. I have e-mailed DR P extensively, and he said it would be hazordous to give me a DX without actually seeing slides, reports.. can your daughter eat at all???? neocate?????? Re: going for 3rd IVIG Kathleen. Our daughter had a terrible reaction (developed aseptic meningitis) after her first infusion and the subsequent ones were not that much better (anxiety, migraines, nausea, etc. for 2-4 days)--even with her premeds. Then, we switched to Gamunex and gave her 5cc, then 10cc, up to 30 cc max. She does great now. No side effects at all! And, no premeds! trowlake <kkrt1@...<mailto:kkrt1@...<mailto:kkrt1@...<mailto:kkrt1@msncom>>> wrote: Hi , I hope this goes better than the last, any suggestions as to what rate to ask for... it took 2 hr to infuse him last time.. he does fine through the infusion but is sick for a week afterward.. kathleen mom to conan 23 months 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 -unsubscribe@groups<mailto:-unsubscribe@groups<mailto:PedP\ ID-unsubscribe@groups<mailto:-unsubscribe@groups>> To search group archives go to: /messages<PedP\ ID/messages</messages<http://groups..co\ m/group//messages>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 do you have instant messanger on ? if so I am trowlake, IM me tonight.. Re: going for 3rd IVIG Yes, frustrating, and annoying.. I am a psychologist, and for me to be frazzled is a bit much... I will pick their brain today.. I will be home and try to call you.. I have e-mailed DR P...can your daughter eat at all???? neocate?????? I can totally relate!!! I am a registered dietitian and my dissertation addressed the miseducation/undereducation of physicians with regard to nutrition in the U.S. My daughter's GI doc told me that her GI problems could be dietary (w/o reference to allergic disease whatsoever) and that he wanted to run a nutrition analysis on my daugher. My husband was at the appointment and could not believe that I did not strangle our doc. Well, we are going to " interview " a new GI doc tomorrow...and have put a call in to Dr. P. Will keep you posted. ...she gets most foods though each bite is a struggle for her. For the past two weeks, she can not stool without my help. Quote Link to comment Share on other sites More sharing options...
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