Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , I would like to caution you on stopping IVIG even thought you had no problems. My daughter 11 CVID has played the roller coaster game with her treatments. No IVIG all summer did great stopped IVIG and by January very sick and it took the rest of the winter bring numbers where they need to be. We again did treatments and she was doing great. Tried to stop again and once again four months down the road antibiotic would not work. We went a full year with treatments and she did great. We have started our second full year and she is having a rough start at school this year. I guess what I learned is we thought she was doing well and levels just dropped so low it was hard to get them back to the normal range. I am not basing this on any medical advise just what happen with us. I wish you the best of luck knowing what a hard decision this is. Lorri * CVID 11 yrs pneumovax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , I would like to caution you on stopping IVIG even thought you had no problems. My daughter 11 CVID has played the roller coaster game with her treatments. No IVIG all summer did great stopped IVIG and by January very sick and it took the rest of the winter bring numbers where they need to be. We again did treatments and she was doing great. Tried to stop again and once again four months down the road antibiotic would not work. We went a full year with treatments and she did great. We have started our second full year and she is having a rough start at school this year. I guess what I learned is we thought she was doing well and levels just dropped so low it was hard to get them back to the normal range. I am not basing this on any medical advise just what happen with us. I wish you the best of luck knowing what a hard decision this is. Lorri * CVID 11 yrs pneumovax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 , What is the Prevnar? Is it the same as the pneumovax? You said over 200 to most serotypes; what serotypes? The Pneumovax has 14 serotypes. My son has levels in all of them, but there is no reference range and his TOTAL after adding all serotypes was 19.9 pre and 34.34 post- titers. The only info is the importance of post-titers being at least two-fold to be considered a responder (a weak one.) Please excuse my persistence but I truly don't understand and the doc isn't explaining anything. We want to make an informed decision. Re: pneumovax > My info is about the same as Ursula's. Our immuno said if you don't make at > least a 2 fold increase, you are probably not a normal responder (hence, > 's diagnosis), but she feels as long as you are over 200 to most > serotypes you are in pretty good shape. > > Only problem with this is 's have dropped off the charts before, so I > don't feel comfortable with her levels from May...which was 5 of the 7 > serotypes in the Prevnar over 200. Last summer she was over 200 in all 7, and > three months later all but one were under 100. > > ???????????????????? > > (mom to , age 2, polysaccharide antibody def, IgA def) > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2001 Report Share Posted September 10, 2001 , What is the Prevnar? Is it the same as the pneumovax? You said over 200 to most serotypes; what serotypes? The Pneumovax has 14 serotypes. My son has levels in all of them, but there is no reference range and his TOTAL after adding all serotypes was 19.9 pre and 34.34 post- titers. The only info is the importance of post-titers being at least two-fold to be considered a responder (a weak one.) Please excuse my persistence but I truly don't understand and the doc isn't explaining anything. We want to make an informed decision. Re: pneumovax > My info is about the same as Ursula's. Our immuno said if you don't make at > least a 2 fold increase, you are probably not a normal responder (hence, > 's diagnosis), but she feels as long as you are over 200 to most > serotypes you are in pretty good shape. > > Only problem with this is 's have dropped off the charts before, so I > don't feel comfortable with her levels from May...which was 5 of the 7 > serotypes in the Prevnar over 200. Last summer she was over 200 in all 7, and > three months later all but one were under 100. > > ???????????????????? > > (mom to , age 2, polysaccharide antibody def, IgA def) > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2001 Report Share Posted November 11, 2001 Belinda: Thank you for your message. This was about a year ago, and the insurance company took care of things, It was just ironic the other night when I was talking with my husband and reviewed the bill. We were very suprised. Quote Link to comment Share on other sites More sharing options...
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