Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hey Guys, 's immunologists (and I) decide to trial off of IVIG for at least 4 weeks this summer and then restudy his immune system. He started IVIG at 15mts of age and did it for a year then switched to weekly SQIG for 7mts then went back to IVIG every 3 weeks(he will be 4 at the end of Aug). The past 2 summers he was not healthy enough to trial off to retest. Because of his age there is the hope he may outgrow his problems. He had a tonsillectomy, sinus surgery #6, and steroid injections 2 weeks ago. At his follow up ENT appt, the ENT doctor said he is healing but on the slower side and he also already had sinus stuff going on again-ahhh. He did a couse of omnicef right after surgery and she put him on bactrim at his follow up appt for the sinus stuff. I was concern because he has this horrible cough that is not getting any better. She suggested follow up with his pulmonolgist for his worsening cough. Whenever his sinuses get infected his lungs flare up. He was due for his IVIG last Tuesday but missed it because of the trial off. His immunologist said they would reconvene the trial if he got any new infections or clinically was not doing well. At what point do you think the immunologist will really reconvene the trial. always has sinus stuff going on but do I say something to them or just wait and see what happens? I really want to restudy his immune system to see where he is at but I don't want to jepardize his health either? I heard that it takes 3 mts for the pooled IG to get out of his system. What would you do? Any thoughts or suggestions would be appreciated. Thanks! Proud Mom of 4: with a possible immune problem now too 3yr old : PID~combine immune deficiency and etc... 5yr old : allergies, chronic sinusitis, one enlarge tonsil 7yr old Noah: asthma, ADD 9yr old Hannah: asthma, allergies, urinary reflux, T & A www.caringbridge. org/visit/ matthewmichael Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 We trialed one son off and one son is still on. We got to Cincinnati Children's bone marrow failure clinic and we saw a doctor there who tested the IgG levels 3 months later and then waited to retest his immune system until even later than that. He tested certain titers along with the IgG levels to be sure they were low enough to retest his immune system and get a good *reading* When he was younger he did not respond well to the PPV.but this last time he made a response, but like we were reminded, it doesn't mean he'll *keep* it. So far he has been off of IgG for a year and doing really well. My other son only had one pneumonia this past winter.but we never trialed him off because he gets infections that land him on steroids (make his asthma flare) and has always seemed a bit worse off than .. we may take him off in the future. Peace be with you, Pattie Understanding is the reward of faith. Therefore, don't seek to understand so that you may believe, but believe so that you may understand. -- St Augustine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 , In my opinion I would be concerned. It does not make sense to trial off for 4 weeks. We trialed off and it was for 100 days. It takes this long to get it out of the system. Also your son has just had a pretty major surgery trying to get a handle on things. Why not support his system for awhile so that he can get the greatest benefits from the clean out. In most of our cases it takes atleast a year to get full benefits from gammaglobulin infusions. Then the kid gets some stability for the body to recoup. This is such an important time in development and it does not makes sense to me to put him through so much physically when he could be thriving and growing. Our doctor wanted us to commit to gammaglobulin for at least 4 years when we started it at the age of 3. We actually waited until he was 10 to trial off and found out that he could not handle it off of it. I would be asking for some specific testing that he is planning to do after the 3-4 months so that you get the info you need this time. That would be a complete workup including vaccine titers to know where you are heading next. I would want a plan in hand. In my sons case we ended up on antibiotics the entire time we were off of IVIg because of sinus and lung issues. But, we were able to get another glimpse of his system and it was not something he could tolerate. He still did not build antibodies. BARBIE Trialing off of IVIG? Hey Guys, 's immunologists (and I) decide to trial off of IVIG for at least 4 weeks this summer and then restudy his immune system. He started IVIG at 15mts of age and did it for a year then switched to weekly SQIG for 7mts then went back to IVIG every 3 weeks(he will be 4 at the end of Aug). The past 2 summers he was not healthy enough to trial off to retest. Because of his age there is the hope he may outgrow his problems. He had a tonsillectomy, sinus surgery #6, and steroid injections 2 weeks ago. At his follow up ENT appt, the ENT doctor said he is healing but on the slower side and he also already had sinus stuff going on again-ahhh. He did a couse of omnicef right after surgery and she put him on bactrim at his follow up appt for the sinus stuff. I was concern because he has this horrible cough that is not getting any better. She suggested follow up with his pulmonolgist for his worsening cough. Whenever his sinuses get infected his lungs flare up. He was due for his IVIG last Tuesday but missed it because of the trial off. His immunologist said they would reconvene the trial if he got any new infections or clinically was not doing well. At what point do you think the immunologist will really reconvene the trial. always has sinus stuff going on but do I say something to them or just wait and see what happens? I really want to restudy his immune system to see where he is at but I don't want to jepardize his health either? I heard that it takes 3 mts for the pooled IG to get out of his system. What would you do? Any thoughts or suggestions would be appreciated. Thanks! Proud Mom of 4: with a possible immune problem now too 3yr old : PID~combine immune deficiency and etc... 5yr old : allergies, chronic sinusitis, one enlarge tonsil 7yr old Noah: asthma, ADD 9yr old Hannah: asthma, allergies, urinary reflux, T & A www.caringbridge. org/visit/ matthewmichael Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.