Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Hi Missy, well, my guess is that when they ask you to do it at home without a nurse, I am guessing that they will come and start it and then leave when they ascertain all is well to have you finish it...not an uncommon practice. Being an EXTREME exception to the rule due to my background as a paramedic and the fact that the home infusion companies in Vegas refuse to stay for the infusion, I start my own IVs. Even well trained, I would NEVER attempt to start an IV on my kiddos. So I want to put my two cents in. Infusing at home is a great option. It is nice from the standpoint that you are not exposing your child to other illnesses that may be in the facility you go to. The convenience of being in your own, familiar environment and life can go on, is nice. I would be extremely skeptical about caring for a child through and IV infusion without a nurse present. The issue is (according to my local immuno and others) is that at any time, no matter how long you have infused, you can have an unpredicted, severe reaction during the course of the infusion. I think when there are adults helping adults, it is not so scary, but for a child it would scare me it, even with my training. I would demand that a nurse be present for the entire infusion. Perhaps the infusion company is thinking that you are talking about subq....a totally different situation. I do not know of any PIDD adults at home other than myself that actually start their own infusion.....there may be a couple. Most have a nurse that comes and starts it; stays for a bit; makes sure their is another responsible adult present, then leaves. But I do not know of any parents of children that infuse their children at home without a nurse.....IV. Very scary. Talk to your doc about it and make sure the home health company understands what you are talking about and what you understand them to be recommending. I would demand that a nurse be there for the ENTIRITY of the IVIG infusion. Good Luck! Terri > > Hi all... > > We are considering doing IVIG at home for who is 10 and has been getting IVIG for 5years. However the home care company (Coram) is suggesting that I learn to do this without a nurse at home. (I am a nurse but in an NICU) > Do any of you do IVIG at home? > With or without a nurse at home? > How does it work? > Have you had any side effects at home that have required interventions? > > He does have a port a cath but it does have a clot on the end of it so we use TPA instead of heparin. > > Any info or comments would be greatly appreciated! > Thanks... > Missy > www.caringbridge.org/boggiokids > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Missy, I missed the part that you are a nurse. OOPS! Well, it sounds that you may be able to handle it under that situation. Sorry. You asked about reactions.....my local immunologist hates that I infuse at home and has asked me " do you have any idea how bad an adverse reaction can be.... " he went on to tell me that he has had patients that required not one, but several doses of epinephrine to counteract the reaction. But he has accepted that if I do not infuse myself, it means that I don't infuse....a likely worse scenario then the somewhat remote possibility that I have an adverse reaction after some 43 years of immunoglobin (off and on). You have to feel comfortable with it......know that you will respond to an emergency ok because it is your child.....that your child is ok with you doing the stick (I think mine would hate it!). Obviously, sticking preemies is a daunting task and I would think it would be easy to start and IV on your child after that? You are definately in a unique position with a unique opportunity to simplify infusions. I have not had any problems infusing at home except for the occasional difficulty hitting a vein....most of the time, I am able to get it on the first stick. Maggie and Molly are my little nurses and love to be part of it (my hubby is also present and loves the opportunity to torture me!....LOL) Good Luck with the decision. Terri > > > > Hi all... > > > > We are considering doing IVIG at home for who is 10 and has > been getting IVIG for 5years. However the home care company (Coram) > is suggesting that I learn to do this without a nurse at home. (I am > a nurse but in an NICU) > > Do any of you do IVIG at home? > > With or without a nurse at home? > > How does it work? > > Have you had any side effects at home that have required > interventions? > > > > He does have a port a cath but it does have a clot on the end of it > so we use TPA instead of heparin. > > > > Any info or comments would be greatly appreciated! > > Thanks... > > Missy > > www.caringbridge.org/boggiokids > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 , Mark started IVIG at 3 months, and infused in the clinic until he was 3. We have been doing home infusions for the past 4 years. I love home infusions. There are no words for how much better they are for Mark, as far as his anxiety and fear go and how much more comfortable he is getting infused on his own couch, watching his own movies and eating his own peanut butter! For us, the infusion pharmacy sends the IVIG either the day of or the day before his treatment. We keep all the nursing supplies. The nurse comes, starts the IV and stays with him the entire time. She takes his vitals every 15 minutes, just like in the clinic. I would be very apprehensive about no nurse being present--I am almost shocked that they would suggest it. No matter how minimal, there is still a risk of a serious complications. I would think in an emergency (though unlikely) your judgment would be affected, even if you are a nurse. He has never had a problem with his infusion, but sometimes we have trouble with the stick. If that happens, they call another nurse to come out and take a look. Usually the 2nd nurse can get the line in. Home infusions are so much better for Mark than the clinic, I think they are wonderful. It's easier on the schedule, with school and activities (we either do ours in the morning and he goes in at lunch or late afternoon & he only misses an hour or two). Good luck! , mom to Mark, 7 CVID > > Hi all... > > We are considering doing IVIG at home for who is 10 and has been getting IVIG for 5years. However the home care company (Coram) is suggesting that I learn to do this without a nurse at home. (I am a nurse but in an NICU) > Do any of you do IVIG at home? > With or without a nurse at home? > How does it work? > Have you had any side effects at home that have required interventions? > > He does have a port a cath but it does have a clot on the end of it so we use TPA instead of heparin. > > Any info or comments would be greatly appreciated! > Thanks... > Missy > www.caringbridge.org/boggiokids > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Hi - Our daughter has been doing IVIG/Sub-q at home for 3 years-she first started with IVIG every 3 weeks and a nurse from Accredo (home health company) would come to the house to do her IV and premedicate with Benedryl ,Solemedrul and Advil--then last year our daughter wanted to know more about Sub Q- we thought it would be a good idea since she always had such horrible headaches after her IVIG infusions, and we felt it might give her some feeling of control over this disease. We were fortunate enough to met Carol Miletti and from Vivaglobulin (both have immune deficiencies) at the IDF Conference in St Louis. They helped us to understand Sub Q and we were able to ask them questions and receive a CD rom with addtional info about Sub Q--Our daughters immuno approved and our insurance company also approved. We still use our home health company (Accredo) to get the meds and they are wonderful at calling to check on our daughter and keep up with all the insurance stuff-they get approval for us every 6 months-we don't have to worry-which is great--Our daughter infuses 52ml of subq every week- takes about 4 hours-she does the entire treatment herself- puts the small needles in herself etc--no longer needs to premedicate- she can walk around the house while infusing or go shopping or do chores-it has given her a new freedom which has been great. The only side effects she gets from sub q is alittle bit of bloating for a day or so afterwards and sometimes some swelling in the injection sites that last about a day. She does not use numbing cream-but Accredo does provide it if necessary- we also have an epi pen on hand in case its needed- thankfully she has never had an serious adverse reactions- our only rule is that she wait for another family memeber to be home before starting her treatment. Our daughter is 16 and started sub-q on her own at 15- she recently told her immuno that there is no way she wants to go back to IVIG-she enjoys the freedom of Subq. Feel free to email us if you have any other questions-rsknp@... Sue Petrelli mom to 16 yr old (CVID) Boggio <m_boggio@...> wrote: Hi all... We are considering doing IVIG at home for who is 10 and has been getting IVIG for 5years. However the home care company (Coram) is suggesting that I learn to do this without a nurse at home. (I am a nurse but in an NICU) Do any of you do IVIG at home? With or without a nurse at home? Thanks... Missy www.caringbridge.org/boggiokids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 I am a Peds NICU nurse and I would personally not be willing to start an IV on my kids. I think that it is invasive enough to do sub Q. Can he not do SubQ? We do our sub Q at home and my son is 12. He gets very upset with me still when I have to do his infusions. I choose to do them very early in the morning while he is still sleeping. And still he sometimes refuses and we battle over it. I know every kids is different but with the possible reactions etc I am not sure I woud be willing to IV. We did IV at our doctors office for 6 years before with just in and out IVs no port and it went well but it was still not unusual to have more than one stick. I am not sure what the dynamics would become if I tried to keep sticking him when I could not get it in. With a port I might be willing. BARBIE IVIG at home Hi all... We are considering doing IVIG at home for who is 10 and has been getting IVIG for 5years. However the home care company (Coram) is suggesting that I learn to do this without a nurse at home. (I am a nurse but in an NICU) Do any of you do IVIG at home? With or without a nurse at home? How does it work? Have you had any side effects at home that have required interventions? He does have a port a cath but it does have a clot on the end of it so we use TPA instead of heparin. Any info or comments would be greatly appreciated! Thanks... Missy www.caringbridge. org/boggiokids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 I agree about it being our own child. Also, sometimes I dream of the simplicity of a port....I have to go for the veins.....feet....hands....forearms....whatever I can find. The last time I did my IV, it took 12 sticks.....UGH!!!!! I usually get it on the first try, but it is so hot here that I could not drink enough to get my veins to cooperate....now....imagine that being your child. Being a masochist is one thing...but I could not do it to my own child for sure. Terri > > > > Hi all... > > > > We are considering doing IVIG at home for who is 10 and has > been getting IVIG for 5years. However the home care company (Coram) > is suggesting that I learn to do this without a nurse at home. (I am > a nurse but in an NICU) > > Do any of you do IVIG at home? > > With or without a nurse at home? > > How does it work? > > Have you had any side effects at home that have required > interventions? > > > > He does have a port a cath but it does have a clot on the end of it > so we use TPA instead of heparin. > > > > Any info or comments would be greatly appreciated! > > Thanks... > > Missy > > www.caringbridge.org/boggiokids > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hi Missy, My oldest son, , had been receiving IVIG for 6 years.... the first few years in Children's Hospital Clinic, and the last few at home with an infusion nurse through Accredo. My younger two also started in the clinic and then switched to Home Care. We loved the convenience of having the treatments at home... and our nurse is still a part of our family. That said, we DID experience a serious reaction at home.... AND the nurse had already left (it was immediately following his treatment)..... AND I did not recognize it as a reaction at the time. It was very scary. After this experience, I would URGE anyone having IVIG at home to have a nurse present for the ENTIRE infusion. It's just not worth the risk because reactions can happen anytime. 's reaction was Aseptic Meningitis..... it began with severe abdominal pain and severe migraine. He then had a grand mal siezure and temporary paralysis. He was screaming in pain and very frightened. I took him to the Children's ER and it took many doses of narcotics to finally ease his pain enough that he could discuss what he was experiencing with the doctor. For a month, he laid on the couch at home, insisting that all lights stayed off and everyone in the house be quiet... he was that sensitive to everything. His vision was permanently changed as a result and he now has to take daily medicines to keep migraines under control..... he is also now being watched for a siezure disorder. So it is a big deal. Please remember that even after doing well for years, things can change in a moment. We tried IVIG with a few product and pre-med changes, but still had severe reactions... (breathing trouble requiring epinephrine). Even though Ben had been getting IVIG for 6 years with no problems, he could no longer tolerate it. We now do subq at home for all 3 boys because the side effects are less likely. All three are doing well with this arrangement and like being able to be home and also having me administer the treatment rather than a nurse. Just our experience! , mom to 3 with CVID: (8), (6), Matty (almost 3), all on subq weekly http://www.teamhope.info/http://foxfamilypidd.bravehost.com/ _________________________________________________________________ Introducing Live Search cashback . It's search that pays you back! http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=introsrchcashb\ ack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 " Don't need to monitor their vital signs " ??!! Are you kidding me?? I think the home care nurse maybe needs some more education on IVIG. Monitoring their vitals is the best way to know if they are starting to react! Mark's nurse does his vitals every 15 minutes. They take his BP, his heart rate, listen to his lungs, and take his temp. I know there are serious side effects to IVIG, but sometimes we have to balance it all. For Mark, when he was in the clinic it was a 12 hour day, with dry heaves from nerves by the time we got the hospital. We're talking pure terror. On other days, we were dealing with significant stress and anxiety. Our immuno recommended home care for Mark, and it has had a dramatic improvement on his wellbeing. We keep the benadryl bag and epi ready in the event of a reaction, but so long as it is going well, we're not willing to upset the apple cart. I have to say, though, our pump comes pre-programed. The nurse can't just adjust the rates--although I'm guessing if she needed to slow it down she would be able to call the pharmacy and get the code to do it. I would hope. You might want to check into that, to make sure you can adjust the rates. Currently Mark gets 9 grames of gammunex, and it runs in about 2 1/2 hours (which includes a small flush at the end because I insist--I don't want to waste a drop in the tubing!). Good luck to you, and I hope it goes well. , mom to Mark, 7 CVID > > Thank you one and all for your responses... > > has a port a cath so access is not an issue. We are exploring the option of home care due to poor care we have recieved at the hospitals infusion center (yes it is a childrens hospital too). At home we have more control over the rate of the infusion and > the product we get. With home care we will be almost gaurenteed to get Gammunex where as at the hospital the attempted to switch the product without telling me. This along with the pharmacy and the nurse saying IVIG is IVIG. At any point in time our immuno coordinator said we can go back to the hospital infusion suite. > > For now we will have a nurse come and teach me the infusions. Then when I feel ready I can do them at home by myself and have a nurse on call who would come to the house if neccessary as back up. > > As far as reactions, I do want to comment that we right now leave right after the infusion is done, so a reaction an hour after his infusion was finished we wouldnt catch anyway at the hospital. They practically throw us out the dooe as it is. Nor am I totally convinced that they would know enough to stop the infusion if I told them I thought he was reacting, they would probably disagree with me. > > I do realize that anyone can have a reaction at any time. This is why it is a trial, a way for us to get him the product he needs and go at a rate that is safe for him. I do plan on going back to the infusion center if has any funky reactions. > > For those of you who have done it at home... How did you monitor there vital signs? > The home nurse we met today said we really dont have too, but again as a nurse I dont know how comfortable I am with that. > Did you ever have to slow down there infusions at home? > > THanks again for all the info, it really helps. > Missy > Terri--> > has asthma, along with some decreased lung function. He has only had 2 or 3 reactions that involved his respiratory symptoms. And actually the first sign during those reactions was an icreased agitation, then his sats dropped. But he improved after a NS bolus and slowing down th rate. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2010 Report Share Posted August 27, 2010 My son is 14 and with the exception of 2 infusions has done all of his infusions at home with home health. He loves it. He can do all the things he normally does such as go to his room and do school work, play video games, laptop or watch TV. Being at home also seems to take some of the " I am sick " out of it. FYI, so long as he is doing IVIG, there will always be a nurse who comes to the house, inserts the IV and meds, monitors his vitals and then takes the IV out and disposes of the supplies. Although we have always had the same nurse come to the home, I have heard of some people being frustrated because they always had different nurses coming (which makes it difficult for a HFA kiddo). Every two weeks the Home Health Company ships us every possible supply we could need, including meds we don't use but *might* need, such as IV Benadryl and IV bag of D5 just in case he looks like he needs more fluid. If/when you switch to sub-q, we had a nurse here for as long as we needed her to train him how to administer it to himself and to teach him how to put the needles in. With the right home health company it can be a great opportunity- it helps him feel more " normal " because while he is being infused, we are just go about our business like we normally do at home. Also, not going to the hospital or infusion center made him feel better about doing IVIG because he realized that he is not " sick " just his body is different and this is something he needs to do to stay healthy (Just like I have to take insulin he has to do IVIG). Lastly, you are not stuck with home health forever. Try it- if it doesnt work out, you can always go back to the hospital/infusion center. On Tue, Aug 24, 2010 at 12:51 PM, <bwkw98@...> wrote: > > > Hello, > I need some input regarding IVIG at home. My son is 11 yrs. old and has > Hypogammagloblinemia, He has been on IVIG for 1-1/2 years. We have been > going to the hospital every 4 weeks for treatment. Our Immuno Dr. has > suggested to us to try in home IVIG not SCIG but Intravaneous (IVIG) with > Home Health. I am a liitle nervous about this, I have not heard of or talk > to anyone who have done IVIG this way. Our Immo thought it would be easier > on my son and that the Insurance Company would pay better and less co-pay > for us, I do trust our Immuno.Dr. but I do have to wonder if it is more > Insurance issue why he is suggesting this to us now. I have asked alot of > questions, but would like some input from others re: doing IVIG in this > setting? Is it safe, what if we have a reaction, how much time do we have to > get to hospital??? I am just use to the Doctors and the facitlity right > there incase of anything happening. any thoughts or comments would be > appreciated. Thank You, > > > Kurt 11 yrs. old - Hypogammagloblinemia, aspergers syndrome, ADHD, GERD, > Strabismus, and Asthma possible JIA diagnosis. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2010 Report Share Posted August 27, 2010 My son is 14 and with the exception of 2 infusions has done all of his infusions at home with home health. He loves it. He can do all the things he normally does such as go to his room and do school work, play video games, laptop or watch TV. Being at home also seems to take some of the " I am sick " out of it. FYI, so long as he is doing IVIG, there will always be a nurse who comes to the house, inserts the IV and meds, monitors his vitals and then takes the IV out and disposes of the supplies. Although we have always had the same nurse come to the home, I have heard of some people being frustrated because they always had different nurses coming (which makes it difficult for a HFA kiddo). Every two weeks the Home Health Company ships us every possible supply we could need, including meds we don't use but *might* need, such as IV Benadryl and IV bag of D5 just in case he looks like he needs more fluid. If/when you switch to sub-q, we had a nurse here for as long as we needed her to train him how to administer it to himself and to teach him how to put the needles in. With the right home health company it can be a great opportunity- it helps him feel more " normal " because while he is being infused, we are just go about our business like we normally do at home. Also, not going to the hospital or infusion center made him feel better about doing IVIG because he realized that he is not " sick " just his body is different and this is something he needs to do to stay healthy (Just like I have to take insulin he has to do IVIG). Lastly, you are not stuck with home health forever. Try it- if it doesnt work out, you can always go back to the hospital/infusion center. On Tue, Aug 24, 2010 at 12:51 PM, <bwkw98@...> wrote: > > > Hello, > I need some input regarding IVIG at home. My son is 11 yrs. old and has > Hypogammagloblinemia, He has been on IVIG for 1-1/2 years. We have been > going to the hospital every 4 weeks for treatment. Our Immuno Dr. has > suggested to us to try in home IVIG not SCIG but Intravaneous (IVIG) with > Home Health. I am a liitle nervous about this, I have not heard of or talk > to anyone who have done IVIG this way. Our Immo thought it would be easier > on my son and that the Insurance Company would pay better and less co-pay > for us, I do trust our Immuno.Dr. but I do have to wonder if it is more > Insurance issue why he is suggesting this to us now. I have asked alot of > questions, but would like some input from others re: doing IVIG in this > setting? Is it safe, what if we have a reaction, how much time do we have to > get to hospital??? I am just use to the Doctors and the facitlity right > there incase of anything happening. any thoughts or comments would be > appreciated. Thank You, > > > Kurt 11 yrs. old - Hypogammagloblinemia, aspergers syndrome, ADHD, GERD, > Strabismus, and Asthma possible JIA diagnosis. > > > Quote Link to comment Share on other sites More sharing options...
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