Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Belinda, Ben's immunologist told us if he didn't get a lot better by age 5, he would probably deal with this illness for the rest of his life. They took him off IVIG and tested at 5 and again at 7 with no improvement and no response to pneumovax. He sent a letter at age 7 saying the same thing and that IVIG helps Ben a lot and he will probably always need it. He said he will restest Ben off IVIG at age 15, but expects he will still have CVID. He does check his levels periodically right before they insert the new IVIG to see how his level is holding with IVIG. I'm sorry for the bad news for Cassie. I remember Ben saying at 5, " but I prayed to God for healing, " and I said, " Maybe God chose to make you better through the medicene so you can play with kids that way. " We've all pretty much accepted it now as he is 12. Jan rrdgtchr@... wrote: > We got the news on Cassie's pre/post titers to the pneumovax and she did not > respond to anything. We were disappointed, but at least there is the IVIG > that is able to keep her healthy. I did not get to ask the doctor many > questions because I was on my cell phone and I really was shocked to hear > that she is doing worse than she was the last time we tested her. Her health > off of the IVIG was as good as it has ever been. > > I have a question for the group. Does this mean that she probably will not > outgrow this problem? At the very beginning the doctor was calling it > Transient, but he told me the last time we were in there that if she is not > making any response by now, she probably won't. Have any others heard the > same thing? > > Belinda Rose, > Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > http://click./1/7076/13/_/480115/_/964097989/ > ------------------------------------------------------------------------ > > 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 July 20, 2000 Report Share Posted July 20, 2000 Hi everyone, Sorry I haven't posted much lately..been really busy!! I have a quick question here though... When 's immuno checks his levels before his IVIg goes in they seem to come back in the 400-500's range. He gets 6 grams every 4 weeks. Is this good news or is it the IVIg holding the numbers up? Re: Cassie's results > Belinda, > Ben's immunologist told us if he didn't get a lot better by age 5, he would probably > deal with this illness for the rest of his life. They took him off IVIG and tested at 5 > and again at 7 with no improvement and no response to pneumovax. He sent a letter > at age 7 saying the same thing and that IVIG helps Ben a lot and he will probably always > need it. He said he will restest Ben off IVIG at age 15, but expects he will still have > CVID. He does check his levels periodically right before they insert the new IVIG > to see how his level is holding with IVIG. > I'm sorry for the bad news for Cassie. I remember Ben saying at 5, " but I prayed > to God for healing, " and I said, " Maybe God chose to make you better through the > medicene so you can play with kids that way. " We've all pretty much accepted it now > as he is 12. > Jan > > rrdgtchr@... wrote: > > > We got the news on Cassie's pre/post titers to the pneumovax and she did not > > respond to anything. We were disappointed, but at least there is the IVIG > > that is able to keep her healthy. I did not get to ask the doctor many > > questions because I was on my cell phone and I really was shocked to hear > > that she is doing worse than she was the last time we tested her. Her health > > off of the IVIG was as good as it has ever been. > > > > I have a question for the group. Does this mean that she probably will not > > outgrow this problem? At the very beginning the doctor was calling it > > Transient, but he told me the last time we were in there that if she is not > > making any response by now, she probably won't. Have any others heard the > > same thing? > > > > Belinda Rose, > > Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis > > > > ------------------------------------------------------------------------ > > Failed tests, classes skipped, forgotten locker combinations. > > Remember the good 'ol days > > http://click./1/7076/13/_/480115/_/964097989/ > > ------------------------------------------------------------------------ > > > > 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. > > > ------------------------------------------------------------------------ > Old school buds here: > http://click./1/7081/13/_/480115/_/964106158/ > ------------------------------------------------------------------------ > > 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 July 20, 2000 Report Share Posted July 20, 2000 Ursula, I have asked both Dr. Hostoffer and Dr. on (our local immunologist) about the Prevnar, and each had the same reaction..... " Mark will not make any antibodies to it. " I am assuming that this is based on information that they already know about Mark, as he does not make Neoantigens. It did not appear to me that either of these two physicians were big on Prevnar. Wish I could help. Autumn (Mom to Mark Cd5-Cd19 PID and ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 In a message dated 7/20/00 10:24:58 AM Pacific Daylight Time, uahollem@... writes: << still no mention of trying the Prevnar? >> I asked my doctor about testing with the Prevnar and he told us that Prevnar was for small children . That since showed very little response to the pneumovax there was no need for Prevnar. He was confident that would not responded to Prevnar. So we did not push the issue. Hope you get some answers. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Belinda - still no mention of trying the Prevnar? I keep wondering why we're the only ones that have been told that the pneumovax isn't as good as the Prevnar and that we'll never test with the pneumovax 23 again but always with the Prevnar. I'm so frustrated. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Ursula, I heard if we give Cassie the Prevnar, it would screw up further testing. That is all I have heard. I just was told not to ever give Cassie the Prevnar because of how he tests Cassie's immune response. Hope this helps. Spoke to the immunologist and he set up Cassie's next appt. for IVIG for the 31st. We will be back to 3 weeks between infusions. He wanted to get her infused before school starts. She is taking it like a trooper. He also wants to try to test her again in a couple of years. I am almost weary now but we will cross that bridge later. Hope all of the pumpkins are doing well. Belinda Rose, Mom to Allyssa and Cassie (igg immunodefficient, asthma, chronic sinusitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 I have asked about the prevnar and it is still not available in our area yet. Destiny Quote Link to comment Share on other sites More sharing options...
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