Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Amy, A couple of things occurred to me when I read your post. My Rebekah took almost a year to recover to reasonable health after starting IVIG every 3 weeks through a port. She was so run down from countless infections that she did not recover quickly. The other thought was about sinus infections. Our ped told us that sinus infections are hard to treat and cure because the antibiotic has trouble getting there and unless you keep the sinus passages open, it is easy for a tiny amount of bacteria to get trapped there and for a repeat infection to start. Are you using any nasal steroid spray on your son? That really helped us defeat our last sinus infection. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 is subQ as effective as IVIG? Nick has had 4 infusions of SubQ IG. He really isn't getting any better and actually he has been more severely sick since starting the subQ than he was before it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 from Dale, Mom to Katy, CVID, age 20 Amy, I've got a few thoughts to share. First, IVIG or SCIG, doesn't really " work " quickly. I think of it as coming home from vacation when the weather is around zero and you turn the furnace on. Yes, the furnace is now running at full-speed, but it will take a while to get the house warm because every piece of furniture is cold, every closet is cold, every space is cold. It will take hours to get warm. With IVIG or SCIG you are adding antibodies, but they are getting eaten up quickly by the germs in the body. So, it takes many, many infusions before the body is at a comfortable level where everything is staying germ free. Secondly, IgA is the primary protector of the sinuses and no IgG replacement is going to make a substantial dent in a sinus infection. I feel that the only thing that IVIG or SCIG does for a sinus infection is to help prevent it from starting by helping the body get healthier in general so that minor infections can be treated with antibiotics and not turn into monster infections. Once you've got a monster infection in the sinuses -- I don't believe you should be expecting IgG replacement to do a lot. However, on the flip side -- when a PID patient is being bombarded by an infection that is out of control, sometimes the treatment is to saturate him/her with IgG in order to help keep the infection from going systemic (sepsis). So, your immunologist may recommend a round of IVIG in order to boost his system along. Finally, is SCIG just as effective as IVIG? In all the studies that I've read, SCIG is slightly more protective because you don't see a drop in levels once that protective level is reached. With IVIG you see the protective level fall throughout the month or 3 weeks, with SCIG you see a stable protective level at all times. But that is only after the level has been reached. I'm not sure when that level is reached if you are just beginning SCIG. Hope some of these thoughts help. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Pam, Thanks for the reply. Nick is using a abx nasal spray along with saline nasal spray several times a day. The immuno's office called and I really didn't understand what she said.. something about positive for organisms.. but that it was okay because he was still on the abx. We were told to finish off the abx and call them at the end of the week if he wasn't better. Amy, mom to: , 20 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid, claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF) RE: is subQ as effective as IVIG? Amy, A couple of things occurred to me when I read your post. My Rebekah took almost a year to recover to reasonable health after starting IVIG every 3 weeks through a port. She was so run down from countless infections that she did not recover quickly. The other thought was about sinus infections. Our ped told us that sinus infections are hard to treat and cure because the antibiotic has trouble getting there and unless you keep the sinus passages open, it is easy for a tiny amount of bacteria to get trapped there and for a repeat infection to start. Are you using any nasal steroid spray on your son? That really helped us defeat our last sinus infection. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Dale, Thank you so much. You really have a way of putting things into perspective. I appreciate you taking the time to explain it like that, it really make a lot more sense. I see that we need to give it a lot longer than what we have been. Amy, mom to: , 20 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid, claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF) Re: is subQ as effective as IVIG? from Dale, Mom to Katy, CVID, age 20 Amy, I've got a few thoughts to share. First, IVIG or SCIG, doesn't really " work " quickly. I think of it as coming home from vacation when the weather is around zero and you turn the furnace on. Yes, the furnace is now running at full-speed, but it will take a while to get the house warm because every piece of furniture is cold, every closet is cold, every space is cold. It will take hours to get warm. With IVIG or SCIG you are adding antibodies, but they are getting eaten up quickly by the germs in the body. So, it takes many, many infusions before the body is at a comfortable level where everything is staying germ free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Care - PID patients are a whole different beast. Don't ever let your doc compare your PID child to another immune system functioning child. It's like comparing apples to oranges. 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 / Quote Link to comment Share on other sites More sharing options...
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