Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Good Morning , I have not thoroughly read the other posts, but I want to bring up another point regarding IVIG/SCIG. Our daughters, for reasons explained, have been taken on and off immunoglobin several times over the past 4 years. Each time, it ended in a health crisis that resulted in immunoglobin being re-started. When stopping, the protection offered by Ig replacement dwindles quickly....faster in some than in others. For our daughters, any antibodies they receive from immunoglobin are gone within 10 days of their last subq infusion. It takes about 9 weeks to bring titirs up via sub -q if you are just beginning or have had a gap in infusions. Each time the children's sub-q was stopped, they were given a dose of IVIG to quickly raise their titers to protective levels, and then re-started on SCIg within a week of the IVIG. I know that many docs prefer to use IVIG as a starting dose to accomplish immediate coverage, given that it may take several weeks to receive the full benefit og Ig replacement if given only sub q. For our kiddos, it was critical to get their levels up immediately due to a medical crisis. Given this all, Sub q is sooooooo much better. It is a little tough at first as you try to figure out what routine and which equipment works best for you (everyone is different and there is no one way or one set of equipment that works for everyone). Once you get through the initial adjustment period.....it is a breeze and, given that it takes moments to set up, it causes little interruption in ones life! Our kiddos got set up and went right back to whatever they would normally do....no side effects at all! We are talking to an immunologist right now about restarting the girls. She has several patients on IVIG and has never used sub-q, but is not opposed to it. Personally, I would never do anything different, although we may have to do the bolus dose in order to obtain some immediate effects given that I have one child that is in the midst of a crisis. Everyone here, I am sure, can share what works for them, in terms of schedules and equipment. This is a great place for support. I am willing to help as much as I can with offering ideas/support. Terri > > > Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! > > Thanks, > > > Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) > > > From: bluetaelon@... > Date: Fri, 15 Oct 2010 09:51:58 -0700 > Subject: Re: location for ivig.... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC > > infusion center, I didn't check the price on SCIQ at first but later I got > > curious after we doubled the Ig dose and asked. Even after we doubled the Ig > > dose it was only costing the insurance co $1,200 mo for everything. Its no > > wonder the they jumped on it when we asked. It saves so much that some states > > medicaid programs only cover SCIG in home and not regular IVIG. > > > > > > > > ________________________________ > > From: K <nalla70@...> > > > > Sent: Fri, October 15, 2010 9:24:48 AM > > Subject: location for ivig.... > > > > I am betting the subq is cheaper as you learn quickly to do it at home > > yourselves and do not incur hospital charges etc....really check into it!!! > > > > Makenzie 10 > > 21 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Terri, Thank you for all of the info. I just talked to our doctor's office and they met with the Vivaglobin rep and their goal is to get Caelan over to sub-q. I called our insurance and it is covered and they are faxing the doctor's office for the info on his condition to get it approved. They said we will need once or twice in the hospital with the IVIG and then can switch over. Sounds exactly l like what you are talking about. Thanks so much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig....             Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Thats crazy, what state are you in? ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:35:36 PM Subject: RE: location for ivig.... Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 interesting in OK there was NO option other than Sub Q due to the decreased cost. ( on Medicaid) Her is WA state whatever the doctor orders is what happens. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:35:36 PM Subject: RE: location for ivig.... Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Louisiana....we live in New Orleans....need I say more!! Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Its the same in CA, its what the patient/Dr wants. I wonder if there's been a list complied of each states Medicaid Ig options? ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Fri, October 15, 2010 1:42:16 PM Subject: Re: location for ivig.... interesting in OK there was NO option other than Sub Q due to the decreased cost. ( on Medicaid) Her is WA state whatever the doctor orders is what happens. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:35:36 PM Subject: RE: location for ivig.... Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 It is because mediaid follows parameters set by medicare which means the drug is provided, but no nursing services. It is a nation wide issue. Terri Sent from my Verizon Wireless BlackBerry location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Our situation is good, I really don't mind....he goes every 14 days to the infusion center, he has a port....gets the IVIG and all is OK....Insurances are so stupid/ridiculous....how do they expect the med to get " into " the person..without the nurse?! So of course the price has to go up for the IVIG or any other way in order to cover administration. From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Our situation is good, I really don't mind....he goes every 14 days to the infusion center, he has a port....gets the IVIG and all is OK....Insurances are so stupid/ridiculous....how do they expect the med to get " into " the person..without the nurse?! So of course the price has to go up for the IVIG or any other way in order to cover administration. From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 The BIGGEST issue for me is that my son has spent a great deal of counseling $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has been a LONG haul trying to convince him that I do not LIKE to punish him by requiring all of this. I know that is NOT this way for all of our kids. But for my kid it has been traumatic to not be allowed the assistance of a nurse to work with at home or for him to have the choice to go to a clinic to get his Sub Q started. We are finally doing well about it all. I had to insist 2 years ago that it be started by a nurse in the Immunologists office. ( I am a Pediatric RN so makes NO sense at all). We were REALLY struggling for many months trying to figure out his refusal to do his Gamma and finally figured it out.. He finally told me at 12 that a mom is suppose to HUG you and love you not Poke you. This did not become an issue until he was a teen and I am glad he figured it out or we could have continued in a very difficult relationship throughout his teen years. It is important to talk to your kids about all of this so they do not " carry " this resentment. BARBIE ________________________________ From: Terri Cerda <tcerda@...> Sent: Fri, October 15, 2010 2:50:00 PM Subject: Re: location for ivig.... It is because mediaid follows parameters set by medicare which means the drug is provided, but no nursing services. It is a nation wide issue. Terri Sent from my Verizon Wireless BlackBerry location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 The BIGGEST issue for me is that my son has spent a great deal of counseling $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has been a LONG haul trying to convince him that I do not LIKE to punish him by requiring all of this. I know that is NOT this way for all of our kids. But for my kid it has been traumatic to not be allowed the assistance of a nurse to work with at home or for him to have the choice to go to a clinic to get his Sub Q started. We are finally doing well about it all. I had to insist 2 years ago that it be started by a nurse in the Immunologists office. ( I am a Pediatric RN so makes NO sense at all). We were REALLY struggling for many months trying to figure out his refusal to do his Gamma and finally figured it out.. He finally told me at 12 that a mom is suppose to HUG you and love you not Poke you. This did not become an issue until he was a teen and I am glad he figured it out or we could have continued in a very difficult relationship throughout his teen years. It is important to talk to your kids about all of this so they do not " carry " this resentment. BARBIE ________________________________ From: Terri Cerda <tcerda@...> Sent: Fri, October 15, 2010 2:50:00 PM Subject: Re: location for ivig.... It is because mediaid follows parameters set by medicare which means the drug is provided, but no nursing services. It is a nation wide issue. Terri Sent from my Verizon Wireless BlackBerry location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Probably not since it varies from city to city not only state by state. BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, October 15, 2010 1:49:04 PM Subject: Re: location for ivig.... Its the same in CA, its what the patient/Dr wants. I wonder if there's been a list complied of each states Medicaid Ig options? ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Fri, October 15, 2010 1:42:16 PM Subject: Re: location for ivig.... interesting in OK there was NO option other than Sub Q due to the decreased cost. ( on Medicaid) Her is WA state whatever the doctor orders is what happens. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:35:36 PM Subject: RE: location for ivig.... Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Probably not since it varies from city to city not only state by state. BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, October 15, 2010 1:49:04 PM Subject: Re: location for ivig.... Its the same in CA, its what the patient/Dr wants. I wonder if there's been a list complied of each states Medicaid Ig options? ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Fri, October 15, 2010 1:42:16 PM Subject: Re: location for ivig.... interesting in OK there was NO option other than Sub Q due to the decreased cost. ( on Medicaid) Her is WA state whatever the doctor orders is what happens. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:35:36 PM Subject: RE: location for ivig.... Hi and ...In my state, Sq or even home IVIG is not an option, his Medicaid will only cover it in a hospital or infusion center. and I'm an RN! Go figure,,...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Can I make a suggestion that you call Accredo and see if they can help. They were in Arkansas and we used them in Tulsa so they advocate for patients. We had GREAT care with them providing all supplies meds etc for our sub Q. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 1:47:26 PM Subject: Re: location for ivig.... Louisiana....we live in New Orleans....need I say more!! Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Barbie, Thank you for sharing your story. That is actually one of my biggest worries with the sub-Q. I have no issue with starting it ( have a medical background), but I worry about my son feeling like it is something that I am doing to him or that I am hurting him. From: mother5590@... Date: Fri, 15 Oct 2010 19:42:16 -0700 Subject: Re: location for ivig.... The BIGGEST issue for me is that my son has spent a great deal of counseling $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has been a LONG haul trying to convince him that I do not LIKE to punish him by requiring all of this. I know that is NOT this way for all of our kids. But for my kid it has been traumatic to not be allowed the assistance of a nurse to work with at home or for him to have the choice to go to a clinic to get his Sub Q started. We are finally doing well about it all. I had to insist 2 years ago that it be started by a nurse in the Immunologists office. ( I am a Pediatric RN so makes NO sense at all). We were REALLY struggling for many months trying to figure out his refusal to do his Gamma and finally figured it out.. He finally told me at 12 that a mom is suppose to HUG you and love you not Poke you. This did not become an issue until he was a teen and I am glad he figured it out or we could have continued in a very difficult relationship throughout his teen years. It is important to talk to your kids about all of this so they do not " carry " this resentment. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Barbie, Thank you for sharing your story. That is actually one of my biggest worries with the sub-Q. I have no issue with starting it ( have a medical background), but I worry about my son feeling like it is something that I am doing to him or that I am hurting him. From: mother5590@... Date: Fri, 15 Oct 2010 19:42:16 -0700 Subject: Re: location for ivig.... The BIGGEST issue for me is that my son has spent a great deal of counseling $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has been a LONG haul trying to convince him that I do not LIKE to punish him by requiring all of this. I know that is NOT this way for all of our kids. But for my kid it has been traumatic to not be allowed the assistance of a nurse to work with at home or for him to have the choice to go to a clinic to get his Sub Q started. We are finally doing well about it all. I had to insist 2 years ago that it be started by a nurse in the Immunologists office. ( I am a Pediatric RN so makes NO sense at all). We were REALLY struggling for many months trying to figure out his refusal to do his Gamma and finally figured it out.. He finally told me at 12 that a mom is suppose to HUG you and love you not Poke you. This did not become an issue until he was a teen and I am glad he figured it out or we could have continued in a very difficult relationship throughout his teen years. It is important to talk to your kids about all of this so they do not " carry " this resentment. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Awww, poor little guy....I'm glad he expressed what was bothering him about it....some kids might hold that in forever..and it come out as anxiety or depression.  I'm an RN too, but in my kid's eyes that means nothing to him....in other words, doesn't mean he'll be more cooperative....nursing is what I'm supposed to do to other people, not him.  Before he had his port, one of the hundreds of times he was ill and hospitalized, he needed an IV so bad...they couldn't find a vein....well, my sister, also an RN and IV therapy teacher, said " Enough, I'm going to start this. " she saw a vein to use, but this particular group of nurses was very unskilled in hard-stick kids......But e wouldn't hear of it...his aunt was not to stick him for an IV!  Plus he's got Asperger's, so " the Rules " are black and white! no exceptions.  He has to get Neupogen (GCSF) injections at home 3 times a week, and Vit B12 shots weekly.....he is not very cooperative to say the least. and he's been getting the G-CSF for years!  ugh...Sue        From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 Awww, poor little guy....I'm glad he expressed what was bothering him about it....some kids might hold that in forever..and it come out as anxiety or depression.  I'm an RN too, but in my kid's eyes that means nothing to him....in other words, doesn't mean he'll be more cooperative....nursing is what I'm supposed to do to other people, not him.  Before he had his port, one of the hundreds of times he was ill and hospitalized, he needed an IV so bad...they couldn't find a vein....well, my sister, also an RN and IV therapy teacher, said " Enough, I'm going to start this. " she saw a vein to use, but this particular group of nurses was very unskilled in hard-stick kids......But e wouldn't hear of it...his aunt was not to stick him for an IV!  Plus he's got Asperger's, so " the Rules " are black and white! no exceptions.  He has to get Neupogen (GCSF) injections at home 3 times a week, and Vit B12 shots weekly.....he is not very cooperative to say the least. and he's been getting the G-CSF for years!  ugh...Sue        From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 I like Accredo, they were who supplied his IVIG to the heme/onc clinic where he would go to the infusion clinic, but now the Infusion Center gets it directly from Talecris. Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 I like Accredo, they were who supplied his IVIG to the heme/onc clinic where he would go to the infusion clinic, but now the Infusion Center gets it directly from Talecris. Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 So you " get it " my son has struggled with depression and anxiety and suicidal threats since he was 3. It has been heartbreaking. It has CLEARLY upset him that I have had to make him take meds and even hold him down to get them in him over the years just to keep him alive. I think insurances do not always understand the ramifications for some kids. I know some do not respond this way but for MY kid it has been a HUGE struggle. He realized the other day that he probably was so angry with me for some of the requirements I had to make of him when he was a little guy. I sure LOVE him and it breaks my heart to realize he has struggled so much and has felt so powerless with having to have infusions. We actually did really well with IV because he was " king of the day " and got to choose a movie, small toy and food for the day when he stared gamma IV at the age of 3. At 10 they took him off to retest and after 3 months off he REFUSED to let us do an infusion. It was a NIGHTMARE when then sent a nurse to our home to do an infusion IV and he FREAKED out. She was a seasoned RN but could not get him started mostly because he was so FREAKED. Eventually went to the ER and had to sedate him to get it going. It was a MAJOR effort for over 2 years to get him to do his SubQ. He wanted me to do it at night when he slept. Refused emla because it feels icky and cold. That worked for a few months with Trazadone but then he refused it so after a few more months we ended up in the ER because he too out his infusion before it was done. His immunologist told me that if I did not MAKE him get it that CPS would get involved. ?????? Any way to say the least it was a MESS for awhile. I am still overwhelmed with the idea that they may want to retest him sometime and he goes through the refusing again. It finally took calling the police one time because he needed to go on a plane and REFUSED to get his infusion and became violent. The amazing thing was that the Police officer that came had an immune deficiency and he told him that he was SO LUCKY to get his Gamma since the officer could not get his insurance to pay for Gamma for him so he was sick all the time. ( Also lots of counseling and going to IDF Teen Weekend) We finally have a pretty good thing going and he gets it weekly without making too big a fuss. But still says to me sometimes. ( YOU REALLY LIKE HURTING ME don't you) Again it makes me very sad but nothing I can do or say. Other than I LOVE YOU SON and NO I do not like to poke you. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 9:03:24 PM Subject: Re: location for ivig.... Awww, poor little guy....I'm glad he expressed what was bothering him about it....some kids might hold that in forever..and it come out as anxiety or depression. I'm an RN too, but in my kid's eyes that means nothing to him....in other words, doesn't mean he'll be more cooperative....nursing is what I'm supposed to do to other people, not him. Before he had his port, one of the hundreds of times he was ill and hospitalized, he needed an IV so bad...they couldn't find a vein....well, my sister, also an RN and IV therapy teacher, said " Enough, I'm going to start this. " she saw a vein to use, but this particular group of nurses was very unskilled in hard-stick kids......But e wouldn't hear of it...his aunt was not to stick him for an IV! Plus he's got Asperger's, so " the Rules " are black and white! no exceptions. He has to get Neupogen (GCSF) injections at home 3 times a week, and Vit B12 shots weekly.....he is not very cooperative to say the least. and he's been getting the G-CSF for years! ugh...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 2010 So you " get it " my son has struggled with depression and anxiety and suicidal threats since he was 3. It has been heartbreaking. It has CLEARLY upset him that I have had to make him take meds and even hold him down to get them in him over the years just to keep him alive. I think insurances do not always understand the ramifications for some kids. I know some do not respond this way but for MY kid it has been a HUGE struggle. He realized the other day that he probably was so angry with me for some of the requirements I had to make of him when he was a little guy. I sure LOVE him and it breaks my heart to realize he has struggled so much and has felt so powerless with having to have infusions. We actually did really well with IV because he was " king of the day " and got to choose a movie, small toy and food for the day when he stared gamma IV at the age of 3. At 10 they took him off to retest and after 3 months off he REFUSED to let us do an infusion. It was a NIGHTMARE when then sent a nurse to our home to do an infusion IV and he FREAKED out. She was a seasoned RN but could not get him started mostly because he was so FREAKED. Eventually went to the ER and had to sedate him to get it going. It was a MAJOR effort for over 2 years to get him to do his SubQ. He wanted me to do it at night when he slept. Refused emla because it feels icky and cold. That worked for a few months with Trazadone but then he refused it so after a few more months we ended up in the ER because he too out his infusion before it was done. His immunologist told me that if I did not MAKE him get it that CPS would get involved. ?????? Any way to say the least it was a MESS for awhile. I am still overwhelmed with the idea that they may want to retest him sometime and he goes through the refusing again. It finally took calling the police one time because he needed to go on a plane and REFUSED to get his infusion and became violent. The amazing thing was that the Police officer that came had an immune deficiency and he told him that he was SO LUCKY to get his Gamma since the officer could not get his insurance to pay for Gamma for him so he was sick all the time. ( Also lots of counseling and going to IDF Teen Weekend) We finally have a pretty good thing going and he gets it weekly without making too big a fuss. But still says to me sometimes. ( YOU REALLY LIKE HURTING ME don't you) Again it makes me very sad but nothing I can do or say. Other than I LOVE YOU SON and NO I do not like to poke you. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Fri, October 15, 2010 9:03:24 PM Subject: Re: location for ivig.... Awww, poor little guy....I'm glad he expressed what was bothering him about it....some kids might hold that in forever..and it come out as anxiety or depression. I'm an RN too, but in my kid's eyes that means nothing to him....in other words, doesn't mean he'll be more cooperative....nursing is what I'm supposed to do to other people, not him. Before he had his port, one of the hundreds of times he was ill and hospitalized, he needed an IV so bad...they couldn't find a vein....well, my sister, also an RN and IV therapy teacher, said " Enough, I'm going to start this. " she saw a vein to use, but this particular group of nurses was very unskilled in hard-stick kids......But e wouldn't hear of it...his aunt was not to stick him for an IV! Plus he's got Asperger's, so " the Rules " are black and white! no exceptions. He has to get Neupogen (GCSF) injections at home 3 times a week, and Vit B12 shots weekly.....he is not very cooperative to say the least. and he's been getting the G-CSF for years! ugh...Sue From: SKGCI Family <skgcifamily@...> Subject: RE: location for ivig.... Date: Friday, October 15, 2010, 4:57 PM Thanks . I would really rather do the SCIG. I pulled up some of the studies of reactions with IVIG vs the SCIG and it was such a dramatic difference. I have a medical background so it's not like I'm squeamish about setting it up etc. Plus, we pay a % co-pay so cheaper is much better! Thanks, Mom to Caelan 11 (CVID, specific antibody deficiency, T-cell proliferation defect) From: bluetaelon@... Date: Fri, 15 Oct 2010 09:51:58 -0700 Subject: Re: location for ivig.... Way cheaper, it was costing the insurance $5000 mo for 1 day in the hem/ATC infusion center, I didn't check the price on SCIQ at first but later I got curious after we doubled the Ig dose and asked. Even after we doubled the Ig dose it was only costing the insurance co $1,200 mo for everything. Its no wonder the they jumped on it when we asked. It saves so much that some states medicaid programs only cover SCIG in home and not regular IVIG. ________________________________ From: K <nalla70@...> Sent: Fri, October 15, 2010 9:24:48 AM Subject: location for ivig.... I am betting the subq is cheaper as you learn quickly to do it at home yourselves and do not incur hospital charges etc....really check into it!!! Makenzie 10 21 Quote Link to comment Share on other sites More sharing options...
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