Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Jake trialed off IVIG last year but went back on in April and started SubQ in July....well since fall has arrived he has stayed sick. He has a really bad cold in September, the end of October (Halloween to be exact) he had a sinus infection...he has just stopped his antibiotic and he woke up this morning with what looks like a sinus infection. I realize he is still going to get sick but it seems like this fall he is staying sick. I was wondering if I needed to talk to his dr. about a mainteance antibiotic for the winter??? Is there any of you that have kids on SubQ and and maintenance antibiotic? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 isn't on SubQ - he is on IVIG every 4 weeks AND Septra (Sulfatrim) every day, all year long. We find being on the antibiotics he doesn't get the little infections - ears, sinus, skin - and the IVIG helps with the big infections - pneumonia, cellulitus, etc. Kim (mom to , 6, Hyper IgE - Job Syndrome) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Tristen's been on SubQ for 8 weeks, today will be her 8th infusion. Since being on SubQ she has had 2 sinus infections and possibly a 3rd. I'm debating on taking her in today. She's also on prophylaxis antibiotics. The antibiotics keep having to be switched because she keeps getting break through infections, so the dr's change what meds she's on each time. Right now she's been on full dose Septra for 3 weeks and is to go on half dose after today, but if she's sick, then that will change. Previously she was on Augmentin, but she got a breakthrough with that. Then Biaxin and that didn't touch the sinus infection at all. It's hard to keep up with at times. But yes, even when Tristen is healthy, she is on maintenance antibiotics. le _____ From: [mailto: ] On Behalf Of Misty Sent: Thursday, November 20, 2008 7:37 AM Subject: What's going on?? Jake trialed off IVIG last year but went back on in April and started SubQ in July....well since fall has arrived he has stayed sick. He has a really bad cold in September, the end of October (Halloween to be exact) he had a sinus infection...he has just stopped his antibiotic and he woke up this morning with what looks like a sinus infection. I realize he is still going to get sick but it seems like this fall he is staying sick. I was wondering if I needed to talk to his dr. about a mainteance antibiotic for the winter??? Is there any of you that have kids on SubQ and and maintenance antibiotic? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 from Dale, Also consider whether he's had a growth spurt and needs a dosage increase. We kept forgetting to increase Katy's dosage as she grew and it's very weight dependent. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 I did think about that after I posted.....he is 57 lbs and on 3.2 grams of Vivaglobin a week. I am not sure if that is a low dosage for his weight or not? > > from Dale, > > Also consider whether he's had a growth spurt and needs a dosage > increase. We kept forgetting to increase Katy's dosage as she grew and > it's very weight dependent. > > In His service, > dale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Macey until recently due to bacterial overgrowth took a daily antibiotic. It covered mucosal areas. IVIG or subq uses the veins to get everything where it's going. The lungs are highly vascular so it helps alot there. The sinuses and the gut are filled with mucus. Mucus is usually filled with IgA to protect it. Since infusions have only trace amounts of IgA then there is no help there. Any orifice or organ filled with mucus can continue to get infected. Antibiotics help with that. Sinuses are particularly hard to keep clear. When Macey has sinus infections break through we will treat with 3 weeks worth of a " rescue " antibiotic, usually one she's known to respond to in the past. If that doesn't work then she has some light sedation and a sinus (not nasal) culture is done. We base treatment off of that. SOmetimes we've been proven wrong. It's been viral (basically a bad cold). So we do sinus irrigations and just make sure it doesn't start to drain into her chest. We've also been quick at the 3 week mark to do a CT scan to see which sinuses (if any) are involved. That helps to know if IV meds are needed. Ursula - mom to (16) and Macey (13,CVID) Quote Link to comment Share on other sites More sharing options...
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