Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 , I want you to know that what you are going through is something I have gone through....even now....after years of Ig replacement....going off and now what inevitably seems to be starting back up....I hate it. As mentioned in the previous posts, I think it is harder for us than it is for our kids....we are moms and don't want them to suffer. It is that never ending place of " darned if I do and darned if I don't. " It is a tough spot to be in. Just know you have support here to help you through. Terri Sent from my Verizon Wireless BlackBerry RE: Re: location for ivig.... Valarie, I think you are right. We all do what works for us and none of the decisions are wrong at all, it's just a difference in what works for one might not work for another. I am really struggling with whether we are making the right decision to put Caelan back on IVIG. My husband is very set on putting him back on. The doctor wants him back on. I guess my hesitance is more out of the mom guilt of putting him through all of this. On the other hand, he's already feeling crummy all the time, constant sinus infections, chronic hives, chronic fatigue etc. He's severely allergic to two antibiotics classes already and we've overused penicillins so much that we are concerned about resistance and developing an allergy to those. I also don't want any permanent damage. His last chest CT showed some bronchiectasis and I don't want any of that to progress. It's just so hard to know what the right thing is. I read the list of adverse event for the IVIG and I'm freaked. I remember his really bad reaction when he was 2 and getting IVIG and it scares me. What if something really bad happens? He would have been better off living with a sinus infection. KWIM? Sometimes this parenting thing is really hard and it feels like I'm stuck between a rock and a hard place. My hope is that if we get to sub-q that I can have Caelan assist as much as he is comfortable with and feel like he is somewhat in control of what is happening to him. Anyway, I think everyone here is doing what they feel is best for their child in their given situation. We (our kids and ourselves) were dealt a hard deck to deal with and there are no easy answers with all of this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 I understand Barbie and . I just wanted to share our situation to. There are so many issues that play into how kids cope. Terri Sent from my Verizon Wireless BlackBerry Re: location for ivig.... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > The BIGGEST issue for me is that my son has spent a great deal of >counseling > > > > > $$$'s trying to get over " mom " sticking him or MAKING him get poked. It has >been > > > > > a LONG haul trying to convince him that I do not LIKE to punish him by > > > > requiring all of this. I know that is NOT this way for all of our kids. But >for > > > > > my kid it has been traumatic to not be allowed the assistance of a nurse to >work > > > > > with at home or for him to have the choice to go to a clinic to get his Sub Q > > > > > started. We are finally doing well about it all. I had to insist 2 years ago > > > > that it be started by a nurse in the Immunologists office. ( I am a Pediatric >RN > > > > > so makes NO sense at all). We were REALLY struggling for many months trying >to > > > > > figure out his refusal to do his Gamma and finally figured it out.. He >finally > > > > > told me at 12 that a mom is suppose to HUG you and love you not Poke you. >This > > > > > did not become an issue until he was a teen and I am glad he figured it out >or > > > > > we could have continued in a very difficult relationship throughout his teen > > > > years. It is important to talk to your kids about all of this so they do not > > > > " carry " this resentment. > > > > > > > > BARBIE > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 I understand Barbie and . I just wanted to share our situation to. There are so many issues that play into how kids cope. Terri Sent from my Verizon Wireless BlackBerry Re: location for ivig.... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > The BIGGEST issue for me is that my son has spent a great deal of >counseling > > > > > $$$'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 16, 2010 Report Share Posted October 16, 2010 ROFL!!! we have NEVER had a pet before, largely bc of my asthmatic reactions to dogs and cats. We heard of hypoallergenic dogs and thought it was a scam. But my kids have been so desperate for a pet that we decided to try. We bought a papapoo and they love her to pieces. The third day after we bought, she got an infection in her surgery site and was put on abx. We took her for her shots and she had severe adverse reactions to them, now she needs them separated and premeds of benedryl and steroids. Then she got c.diff. !!!!! But she is a wonderful puppy and Im not allergic to her! The vet we have with CVID is the vet the dog " came with " , its a 45 minute drive, and we initially thought to switch vets after we were done with all the puppy shots...but have decided to stick with this one largely bc of this issue...she's very open about it and I think its great for my kids to see someone else with what they have, living their dream and not letting it hold them back. On the earlier question of how hard it is to decide to start IVIG....tonight Im so grateful that we did. Tonight, I let my two sons go to a cub scout camp out with my husband and I am staying home. Since I am the one who does all the med stuff, this is huge!! they are having such a fun, normal time....before we started IG...this would NEVER have been able to happen:) valarie mom to 3 w/cvid > > > > > > > > > > > > > > > > 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 17, 2010 Report Share Posted October 17, 2010 My daughter, Lacey has CdLS and CVID. She has a MediPort and was on IVIG since a critical illness in 2003. A couple years ago we switched to SQ. Recently her infectious disease doctor decided to switch her back to IVIG (for reasons I'll include in a separate post) and our previous IVIG nurse came to our house and did her first dose. She started out initially getting her IVIG infusions at the day hospital, but for most of the years she was on it, it was done at home with a nurse. Now the home infusion company is telling me that MediCare will not pay for the nurse to come out anymore and they said I should just do it myself at home. I told her I didn't think they would have family do IVIG and she said oh yes, we have families who do their own. Has anyone ever heard of this? Lacey has a nurse at home Mon-Fri 8 hrs/day, but she is an LVN and not supposed to do IV, so it would be on me. I'm very comfortable accessing her port and I always do her IV antibiotics at home, but I thought IVIG had to be given under medical supervision. I REALLY don't want to have to go back to doing it at the day hospital!! Belinda Mom to Lacey, (22, CdLS, CVID, unexplained recurrrent fevers) Oakley, CA In a message dated 10/16/2010 6:12:23 A.M. Pacific Daylight Time, osdbmom@... writes: that is the reason my kids dont want to switch to subq. They say they want me to stay their mom and comfort them, not be the nure and stick them. Right now, Im respecting that. If they change their minds, they know they can switch. But Im not going to force them. They do great with IVIG, and have wonderful nurses. We go to our hospitals infusion room and always have. Its nice, its not like a regular hospital room. There are comfy recliners, games, a big flat screen for movies, a game cube and tons of games. Often, my daughter will bring beads or crafts and the nurses will sit and do those with her:) We used to have a problem with my sons fighting over who HAD to go first. Then, last yr for Christmas, we bought one boy a DSI and one boy a PSP. The catch is, they are only allowed to play with them on IVIG day:) now they just about knock each other down trying to get to their line in first, ROFL. valarie mom to 3 w/cvid > > > > 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. > > > _ _ (mailto: ) > 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 > > > > [Non-text portions of this message have been removed] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Belinda, Actually, there are many patients that do IVIG at home by themselves. Until 19 months ago, when I went off IVIG, I actually started my own IVs (I was a paramedic). I loved it! I would start my IV and then go back to housekeeping or whatever I wanted to do. It was so much better than sitting in a clinic for 10 hours (I had to run mine 10 hours in a split dose twice a month to avoid side effects. Then my local immuno got worried and said no more. He had never had a patient on IVIG outside a clinic. But now, I know there are many, many patients that manage it at home themselves. Also, because reimbursement for nursing care at home is either nill or very poor and limited (in terms of the number of hours they can be there), patients who do have a nurse present of the entire infusion at home is becoming a rarity. I recently talked to a doc about going bacvk on Ig, and explained the concern over managing at home without a nurse. We have ALWAYS made sure someone was with me that was not afraid to use and epi pen and ALWAYS had the epi pen taped to the IV pole). This immuno went on to tell me he has several patients that live in the boondocks in Alaska that start and manage their own IVIG and were NOT paramedics. That being said, I would NEVER want to start an IV on my own kid and would draw the line there. BUT, with a port, it certainly makes it easier to avoid that. All in all, in my opinion, I was watched much more closely at home by my family than I was in an infusion center where they would start the infusion, then leave the room for hours before I saw them again. Medicare really makes it difficult to manage PIDD. The reason I had to stop Ig all together was because they would not allow me to infuse at home without a nurse.....I could not get a nurse to do any more than start my IV at home then leave (I can start my own IV better than most nurses). Then, had I gone to an infusion center, I could not get medicare (it is a secondary policy to my primary) to pay for the infusions. So my copay in clinic was HUGE. Plus, I then had to pay someone $250 each day that I had to be in the clinic so I had someone with my homebound children. There are so many benefits to being at home.....in terms of lessening exposure risk to the emotional benefits. I also wanted to share that 2 years ago, we saw an immuno on consult who wanted to put our kiddos back on IVIG, taking them off subq. He said there had been several studies done where they found that children with chronic lung infections improve more on IVIG than on SCIG. I have not been able to find a study and their regular immuno had never heard of such a thing. Not sure. Terri > > > > > > > > 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. > > > > > > _ _ (mailto: ) > > 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 > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Belinda, Actually, there are many patients that do IVIG at home by themselves. Until 19 months ago, when I went off IVIG, I actually started my own IVs (I was a paramedic). I loved it! I would start my IV and then go back to housekeeping or whatever I wanted to do. It was so much better than sitting in a clinic for 10 hours (I had to run mine 10 hours in a split dose twice a month to avoid side effects. Then my local immuno got worried and said no more. He had never had a patient on IVIG outside a clinic. But now, I know there are many, many patients that manage it at home themselves. Also, because reimbursement for nursing care at home is either nill or very poor and limited (in terms of the number of hours they can be there), patients who do have a nurse present of the entire infusion at home is becoming a rarity. I recently talked to a doc about going bacvk on Ig, and explained the concern over managing at home without a nurse. We have ALWAYS made sure someone was with me that was not afraid to use and epi pen and ALWAYS had the epi pen taped to the IV pole). This immuno went on to tell me he has several patients that live in the boondocks in Alaska that start and manage their own IVIG and were NOT paramedics. That being said, I would NEVER want to start an IV on my own kid and would draw the line there. BUT, with a port, it certainly makes it easier to avoid that. All in all, in my opinion, I was watched much more closely at home by my family than I was in an infusion center where they would start the infusion, then leave the room for hours before I saw them again. Medicare really makes it difficult to manage PIDD. The reason I had to stop Ig all together was because they would not allow me to infuse at home without a nurse.....I could not get a nurse to do any more than start my IV at home then leave (I can start my own IV better than most nurses). Then, had I gone to an infusion center, I could not get medicare (it is a secondary policy to my primary) to pay for the infusions. So my copay in clinic was HUGE. Plus, I then had to pay someone $250 each day that I had to be in the clinic so I had someone with my homebound children. There are so many benefits to being at home.....in terms of lessening exposure risk to the emotional benefits. I also wanted to share that 2 years ago, we saw an immuno on consult who wanted to put our kiddos back on IVIG, taking them off subq. He said there had been several studies done where they found that children with chronic lung infections improve more on IVIG than on SCIG. I have not been able to find a study and their regular immuno had never heard of such a thing. Not sure. Terri > > > > > > > > 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. > > > > > > _ _ (mailto: ) > > 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 > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 For myself, I would not want to do that, and only because if there is an emergency...what would you do? at an infusion center, if a kid reacts to IVIG, there can be staff there in seconds to help...what would you do, for instance, if the child had a rigors reaction(like mine did) after doing IG perfectly fine for years, just out of the blue? or I know some kids who have anaphylaxis reactions, neurological reactions,etc...some kids can do IG just fine for a long time then suddenly react....that would be a lot of responsiblity on your shoulders, when it sounds like you already have an awful lot to deal with concerning your child. I hope you can get things worked out. valarie mom to 3 w/cvid > > > > > > > > > > > > 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. > > > > > > > > > _ _ (mailto: ) > > > 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 > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 For myself, I would not want to do that, and only because if there is an emergency...what would you do? at an infusion center, if a kid reacts to IVIG, there can be staff there in seconds to help...what would you do, for instance, if the child had a rigors reaction(like mine did) after doing IG perfectly fine for years, just out of the blue? or I know some kids who have anaphylaxis reactions, neurological reactions,etc...some kids can do IG just fine for a long time then suddenly react....that would be a lot of responsiblity on your shoulders, when it sounds like you already have an awful lot to deal with concerning your child. I hope you can get things worked out. valarie mom to 3 w/cvid > > > > > > > > > > > > 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. > > > > > > > > > _ _ (mailto: ) > > > 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 > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 Hi Terri~~ Thank you so much for your comments and information! That's very interesting about IVIG and lung infections. Lacey's main problem is her lungs so maybe she will do better on IV vs SQ. It will be interesting to see as we go along! Belinda Mom to Lacey, (22, CdLS, CVID, recurrent unexplained fevers) Oakley, CA In a message dated 10/17/2010 7:03:50 A.M. Pacific Daylight Time, tcerda@... writes: Belinda, Actually, there are many patients that do IVIG at home by themselves. Until 19 months ago, when I went off IVIG, I actually started my own IVs (I was a paramedic). I loved it! I would start my IV and then go back to housekeeping or whatever I wanted to do. It was so much better than sitting in a clinic for 10 hours (I had to run mine 10 hours in a split dose twice a month to avoid side effects. Then my local immuno got worried and said no more. He had never had a patient on IVIG outside a clinic. But now, I know there are many, many patients that manage it at home themselves. Also, because reimbursement for nursing care at home is either nill or very poor and limited (in terms of the number of hours they can be there), patients who do have a nurse present of the entire infusion at home is becoming a rarity. I recently talked to a doc about going bacvk on Ig, and explained the concern over managing at home without a nurse. We have ALWAYS made sure someone was with me that was not afraid to use and epi pen and ALWAYS had the epi pen taped to the IV pole). This immuno went on to tell me he has several patients that live in the boondocks in Alaska that start and manage their own IVIG and were NOT paramedics. That being said, I would NEVER want to start an IV on my own kid and would draw the line there. BUT, with a port, it certainly makes it easier to avoid that. All in all, in my opinion, I was watched much more closely at home by my family than I was in an infusion center where they would start the infusion, then leave the room for hours before I saw them again. Medicare really makes it difficult to manage PIDD. The reason I had to stop Ig all together was because they would not allow me to infuse at home without a nurse.....I could not get a nurse to do any more than start my IV at home then leave (I can start my own IV better than most nurses). Then, had I gone to an infusion center, I could not get medicare (it is a secondary policy to my primary) to pay for the infusions. So my copay in clinic was HUGE. Plus, I then had to pay someone $250 each day that I had to be in the clinic so I had someone with my homebound children. There are so many benefits to being at home.....in terms of lessening exposure risk to the emotional benefits. I also wanted to share that 2 years ago, we saw an immuno on consult who wanted to put our kiddos back on IVIG, taking them off subq. He said there had been several studies done where they found that children with chronic lung infections improve more on IVIG than on SCIG. I have not been able to find a study and their regular immuno had never heard of such a thing. Not sure. Terri > > > > > > > > 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. > > > > > > __ _ (mailto:_ ) _ (mailto:_ _ (mailto: ) ) > > 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 > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > [Non-text portions of this message have been removed] > Quote Link to comment Share on other sites More sharing options...
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