Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi Moms-- There seem to be a few trailing off this summer. I just wanted to let each and every one of you know that you will be in my prayers. Sandi, Mom to , CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 Macey got to 200 before they restarted. She still hadn't been sick. Ursula On Aug 1, 2011, at 1:28 PM, le Mina <daniellemina@...> wrote: > > Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed off for the summer to check levels.right before her last dose her igg levels were around 1100. Since starting subq, her levels have been above 900. I had her blood drawn after 4 weeks of being off and her levels are down to 811. Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to decide if we should hold off another month or start infusions again. Just wondering what I should prepare myself for. During the past 5 weeks, tristen has not had any infections, but I wouldn't say she was great with her health either. Her energy level has been really low and she has been on the edge of being sick. Lots of coughing, sneezing, dark circles under her eyes, but no sinus infection. > > le, mom to > Tristen 6, cvid, asthma > Kaitlyn 9, healthy > Sent from my Verizon Wireless Phone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 we trialed all 3 kids off about two years ago. the summer went great, we still had to go in for labs every 4 weeks or so. then fall came and school started, and their health became a nightmare....it became so bad. They really just crashed, healthwise. I hope we dont trial off again anytime soon. It took like a year before we got my youngest stable again. valarie mom to 3 w/cvid > > Usually you trial off for 100 days over the summer, just a month isn't enough > time to figure it out unless your seeing major infections start. I would be wary > since she's showing signs the levels are dropping to low but I would hold off > another month if you can at least. > > > > > ________________________________ > From: Herzberg <skgcifamily@...> > > Sent: Mon, August 1, 2011 10:32:43 AM > Subject: RE: Trailing off > > le, > > > > I'm not sure, but I can tell you that in a week between subq's we had a 200 > point drop. Caelan was at 1400 the day after his infusion and then his > doctor wanted to see how far he fell in a week to see if he needed to adjust > his dose. He was 1200 after 7 days. I would think that the supplemental > antibodies would stay in her system for quite a while so I'm not sure how > you would get a clear picture in that short time unless she does get an > infection. I'm sure others have more experience with this. I hope that the > doctor will have a better idea in 2 weeks and that she feels more energetic > in the meantime. > > > > > > Mom to Caelan 11 (CVID, asthma, on Hizentra) > > > > _____ > > From: [mailto: ] On Behalf Of > le Mina > Sent: Monday, August 01, 2011 12:28 PM > > Subject: Trailing off > > > > > > > Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed > off for the summer to check levels.right before her last dose her igg levels > were around 1100. Since starting subq, her levels have been above 900. I had > her blood drawn after 4 weeks of being off and her levels are down to 811. > Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to > decide if we should hold off another month or start infusions again. Just > wondering what I should prepare myself for. During the past 5 weeks, tristen > has not had any infections, but I wouldn't say she was great with her health > either. Her energy level has been really low and she has been on the edge of > being sick. Lots of coughing, sneezing, dark circles under her eyes, but no > sinus infection. > > le, mom to > Tristen 6, cvid, asthma > Kaitlyn 9, healthy > Sent from my Verizon Wireless Phone > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 we trialed all 3 kids off about two years ago. the summer went great, we still had to go in for labs every 4 weeks or so. then fall came and school started, and their health became a nightmare....it became so bad. They really just crashed, healthwise. I hope we dont trial off again anytime soon. It took like a year before we got my youngest stable again. valarie mom to 3 w/cvid > > Usually you trial off for 100 days over the summer, just a month isn't enough > time to figure it out unless your seeing major infections start. I would be wary > since she's showing signs the levels are dropping to low but I would hold off > another month if you can at least. > > > > > ________________________________ > From: Herzberg <skgcifamily@...> > > Sent: Mon, August 1, 2011 10:32:43 AM > Subject: RE: Trailing off > > le, > > > > I'm not sure, but I can tell you that in a week between subq's we had a 200 > point drop. Caelan was at 1400 the day after his infusion and then his > doctor wanted to see how far he fell in a week to see if he needed to adjust > his dose. He was 1200 after 7 days. I would think that the supplemental > antibodies would stay in her system for quite a while so I'm not sure how > you would get a clear picture in that short time unless she does get an > infection. I'm sure others have more experience with this. I hope that the > doctor will have a better idea in 2 weeks and that she feels more energetic > in the meantime. > > > > > > Mom to Caelan 11 (CVID, asthma, on Hizentra) > > > > _____ > > From: [mailto: ] On Behalf Of > le Mina > Sent: Monday, August 01, 2011 12:28 PM > > Subject: Trailing off > > > > > > > Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed > off for the summer to check levels.right before her last dose her igg levels > were around 1100. Since starting subq, her levels have been above 900. I had > her blood drawn after 4 weeks of being off and her levels are down to 811. > Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to > decide if we should hold off another month or start infusions again. Just > wondering what I should prepare myself for. During the past 5 weeks, tristen > has not had any infections, but I wouldn't say she was great with her health > either. Her energy level has been really low and she has been on the edge of > being sick. Lots of coughing, sneezing, dark circles under her eyes, but no > sinus infection. > > le, mom to > Tristen 6, cvid, asthma > Kaitlyn 9, healthy > Sent from my Verizon Wireless Phone > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 When we trialed off we had to wait 100 days and then draw pre and post titers with the pneumovaccine. It was a LONG wait and my son was on antibiotics 3 times through the time we were off. Mostly sinus stuff. He failed to respond appropriately after the time off but it was REALLY hard to get him to go back on infusions. We also changed to Sub Q from IV so there was a transition. Hope it continues to go well for you. BARBIE  From: Ursula Holleman <uahollem@...> > " " < > >Sent: Monday, August 1, 2011 11:53 AM >Subject: Re: Trailing off > > >  > >Macey got to 200 before they restarted. She still hadn't been sick. > >Ursula > >On Aug 1, 2011, at 1:28 PM, le Mina <daniellemina@...> wrote: > >> >> Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed off for the summer to check levels.right before her last dose her igg levels were around 1100. Since starting subq, her levels have been above 900. I had her blood drawn after 4 weeks of being off and her levels are down to 811. Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to decide if we should hold off another month or start infusions again. Just wondering what I should prepare myself for. During the past 5 weeks, tristen has not had any infections, but I wouldn't say she was great with her health either. Her energy level has been really low and she has been on the edge of being sick. Lots of coughing, sneezing, dark circles under her eyes, but no sinus infection. >> >> le, mom to >> Tristen 6, cvid, asthma >> Kaitlyn 9, healthy >> Sent from my Verizon Wireless Phone >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 When we trialed off we had to wait 100 days and then draw pre and post titers with the pneumovaccine. It was a LONG wait and my son was on antibiotics 3 times through the time we were off. Mostly sinus stuff. He failed to respond appropriately after the time off but it was REALLY hard to get him to go back on infusions. We also changed to Sub Q from IV so there was a transition. Hope it continues to go well for you. BARBIE  From: Ursula Holleman <uahollem@...> > " " < > >Sent: Monday, August 1, 2011 11:53 AM >Subject: Re: Trailing off > > >  > >Macey got to 200 before they restarted. She still hadn't been sick. > >Ursula > >On Aug 1, 2011, at 1:28 PM, le Mina <daniellemina@...> wrote: > >> >> Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed off for the summer to check levels.right before her last dose her igg levels were around 1100. Since starting subq, her levels have been above 900. I had her blood drawn after 4 weeks of being off and her levels are down to 811. Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to decide if we should hold off another month or start infusions again. Just wondering what I should prepare myself for. During the past 5 weeks, tristen has not had any infections, but I wouldn't say she was great with her health either. Her energy level has been really low and she has been on the edge of being sick. Lots of coughing, sneezing, dark circles under her eyes, but no sinus infection. >> >> le, mom to >> Tristen 6, cvid, asthma >> Kaitlyn 9, healthy >> Sent from my Verizon Wireless Phone >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 My son's last IVIG was in March of 2010. He had pre and post Pneumovax titers done in June of 2011 and mounted an immunity to 9 of 23 which isn't BAD but his immunologist would prefer 18 of 23. From: mother5590@... Date: Mon, 1 Aug 2011 22:45:34 -0700 Subject: Re: Trailing off When we trialed off we had to wait 100 days and then draw pre and post titers with the pneumovaccine. It was a LONG wait and my son was on antibiotics 3 times through the time we were off. Mostly sinus stuff. He failed to respond appropriately after the time off but it was REALLY hard to get him to go back on infusions. We also changed to Sub Q from IV so there was a transition. Hope it continues to go well for you. BARBIE From: Ursula Holleman <uahollem@...> > " " < > >Sent: Monday, August 1, 2011 11:53 AM >Subject: Re: Trailing off > > > > >Macey got to 200 before they restarted. She still hadn't been sick. > >Ursula > >On Aug 1, 2011, at 1:28 PM, le Mina <daniellemina@...> wrote: > >> >> Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed off for the summer to check levels.right before her last dose her igg levels were around 1100. Since starting subq, her levels have been above 900. I had her blood drawn after 4 weeks of being off and her levels are down to 811. Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to decide if we should hold off another month or start infusions again. Just wondering what I should prepare myself for. During the past 5 weeks, tristen has not had any infections, but I wouldn't say she was great with her health either. Her energy level has been really low and she has been on the edge of being sick. Lots of coughing, sneezing, dark circles under her eyes, but no sinus infection. >> >> le, mom to >> Tristen 6, cvid, asthma >> Kaitlyn 9, healthy >> Sent from my Verizon Wireless Phone >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 My son's last IVIG was in March of 2010. He had pre and post Pneumovax titers done in June of 2011 and mounted an immunity to 9 of 23 which isn't BAD but his immunologist would prefer 18 of 23. From: mother5590@... Date: Mon, 1 Aug 2011 22:45:34 -0700 Subject: Re: Trailing off When we trialed off we had to wait 100 days and then draw pre and post titers with the pneumovaccine. It was a LONG wait and my son was on antibiotics 3 times through the time we were off. Mostly sinus stuff. He failed to respond appropriately after the time off but it was REALLY hard to get him to go back on infusions. We also changed to Sub Q from IV so there was a transition. Hope it continues to go well for you. BARBIE From: Ursula Holleman <uahollem@...> > " " < > >Sent: Monday, August 1, 2011 11:53 AM >Subject: Re: Trailing off > > > > >Macey got to 200 before they restarted. She still hadn't been sick. > >Ursula > >On Aug 1, 2011, at 1:28 PM, le Mina <daniellemina@...> wrote: > >> >> Tristen (age 6 with cvid) has been on subq for 3 years now. She was trialed off for the summer to check levels.right before her last dose her igg levels were around 1100. Since starting subq, her levels have been above 900. I had her blood drawn after 4 weeks of being off and her levels are down to 811. Is that a significant drop in just 4 weeks? We see the dr in 2 weeks to decide if we should hold off another month or start infusions again. Just wondering what I should prepare myself for. During the past 5 weeks, tristen has not had any infections, but I wouldn't say she was great with her health either. Her energy level has been really low and she has been on the edge of being sick. Lots of coughing, sneezing, dark circles under her eyes, but no sinus infection. >> >> le, mom to >> Tristen 6, cvid, asthma >> Kaitlyn 9, healthy >> Sent from my Verizon Wireless Phone >> >> Quote Link to comment Share on other sites More sharing options...
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