Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 Sue, I hope you don't mind if I jump in also on this. What's going on that makes them think the boys are progressing to SCID? Along time ago Macey was thought to be SCID and we were sent to Duke University and they did a full work up with tcell functions and a bacteriophage and it showed that she had normal tcell function but was needing to be tested for her antibodies. After the pneumovax levels were run this year they knew that what IgG , IgA and IgM she did produce did work but some of her antibody levels did not respond. What this comes down to is that she has certain infections that don't make her white cells respond. She was septic in November but her white count was only 8,000. But she has no tcell problem. Her ped and ped immunologist say she just doesn't respond to certain organisms appropriately. Macey has had several sinus procedures. She is on Vancanese now and has been for well over a year. It has done wonders. Macey's CT showed that she had cellulitis around her right eye after months of sinus infections that weren't treated right. Plus she had some sinus disease. There's a bone up in her sinuses that is damaged. Macey's had a functional endoscopic sinus surgery (FESS) and two sinus lavages. We've finally found a competent Ped ENT who is wonderful. I'm even letting him pull my older daughters' (also 6 yrs old) tonsils next week (but she's not a full time patient, just a consult). He can't have them both. :-) We've also used Venoglobulin and will never again because it caused a severe respiratory reaction in Macey. Macey takes 10 gms of Gammimmune N 10% every 3 wks. We pretreat with Tylenol and Atarax. She's 18 kg and 40 " tall and will be 4 on April 28. She's lost weight recently but they think it's just her slimming up and not a problem. When she is infused Tuesday they'll decide. Two treatments ago she had dropped 2 pounds in 3 weeks. Then at the last infusion she was stable, no gain but no more loss. So we'll check at this infusion and if she's still that weight then we'll chalk it up to growing up. If she gains it back GREAT, if she loses more then her ped or ped GI will look into it. It actually looks pretty good on her but I don't want to get behind the ball on this. Do either of the boys have a port or some type of access line? Who follows their care, pediatrician or immunologist or someone else? I'm glad you were able to join the group and look forward to hearing about the boys. Ursula Holleman www.netpage.org - Pediatric Primary Immune Deficiency www.netpage.org/macey - Macey's page To subscribe to the Ped PID email list - PedPID-subscribeonelist Quote Link to comment Share on other sites More sharing options...
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