Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading dose and going straight to weekly SCIG. It would save all the trauma of the IV. ________________________________ From: SophieB <celiabrent@...> Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading dose and going straight to weekly SCIG. It would save all the trauma of the IV. ________________________________ From: SophieB <celiabrent@...> Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Hi , This procedure sounds interesting may I ask what SCIG is and means? Thanks so much! In a message dated 3/10/2011 1:34:40 A.M. Eastern Standard Time, bluetaelon@... writes: Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading dose and going straight to weekly SCIG. It would save all the trauma of the IV. ________________________________ From: SophieB <_celiabrent@..._ (mailto:celiabrent@...) > _ _ (mailto: ) Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: _/messages_ (/messages) ! Groups Links [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I agree with , about going straight to SubQ immunoglobulin in this case. It will just take your dd longer to get to her optimum level of IgG, but I wouldn't put my child through that experience again! Plus, with watching you do it every week, she should be more comfortable with subQ. Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It has lots of info. I even found some videos on youtube informative before my son did his first infusion. There are also lots of posts in the history for this group--you can search the history for this topic It is done every week, instead of once a month like IVIG, but for us it works great--done in the comfort of our own home when it is convenient for us, and with much fewer side effects Also, I asked about testing my other two dd, but the doctor said since they are not really symptomatic (typical number of infections), we are not going to right now. However, my dd11 has completely fallen off the growth chart, so if her endo workup this month is negative, we will also test her immune system. Wish us luck! is getting his first dose of Hizentra today, whenever the nurse gets here to observe. We were no longer able to obtain Vivaglobin in our area. I do not anticipate any problems Mindy, mom of , 9 next week!, asthma, CVID, autism+ > Hi everyone! I am new here. I am a Mom to a newly diagnosed little > zebra. We had her tested because, first and foremost, I have CVID, and > she's been sick s lot and doesn't get over things easily. > She's seven yrs old, and hates the whole thing except for watching me do > my Hizentra. > Her first infusion with Gammunex was 2 weeks ago. It was not good. It > took 3 tries to get and IV in. It was traumatic. Then there was a long > wait for the product, increasing the anxiety. Once it was in, it started > burning and itching so bad after an hour that she started flailing her arm > around. Although the IV was taped in well, it must have come out, but > nobody saw it, so it continued to pump IgG on the surface. They were > going to reconnect her, but she was way to upset to start a new IV. What > about doing a PICC line for this? > Thanks for any input! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I would be fine with going straight to sub q, but her doctor is holding onto the idea that you have to do three loading doses to get the child's levels up. I can't stand the idea of going back to the hospital for an infusion after what happened. On the calendar, it is in 2 weeks, though. I wish you luck in getting you other child tested. Maybe lightening didn't strike twice... : " mindy@... " <mindy@...> >Sent: Thu, March 10, 2011 8:21:52 AM >Subject: Re: First time IVIg > > >I agree with , about going straight to SubQ immunoglobulin in this >case. It will just take your dd longer to get to her optimum level of >IgG, but I wouldn't put my child through that experience again! Plus, >with watching you do it every week, she should be more comfortable with >subQ. > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It >has lots of info. I even found some videos on youtube informative before >my son did his first infusion. There are also lots of posts in the >history for this group--you can search the history for this topic >It is done every week, instead of once a month like IVIG, but for us it >works great--done in the comfort of our own home when it is convenient for >us, and with much fewer side effects > >Also, I asked about testing my other two dd, but the doctor said since >they are not really symptomatic (typical number of infections), we are not >going to right now. However, my dd11 has completely fallen off the growth >chart, so if her endo workup this month is negative, we will also test her >immune system. > >Wish us luck! is getting his first dose of Hizentra today, whenever >the nurse gets here to observe. We were no longer able to obtain >Vivaglobin in our area. I do not anticipate any problems > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little >> zebra. We had her tested because, first and foremost, I have CVID, and >> she's been sick s lot and doesn't get over things easily. >> She's seven yrs old, and hates the whole thing except for watching me do >> my Hizentra. >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It >> took 3 tries to get and IV in. It was traumatic. Then there was a long >> wait for the product, increasing the anxiety. Once it was in, it started >> burning and itching so bad after an hour that she started flailing her arm >> around. Although the IV was taped in well, it must have come out, but >> nobody saw it, so it continued to pump IgG on the surface. They were >> going to reconnect her, but she was way to upset to start a new IV. What >> about doing a PICC line for this? >> Thanks for any input! >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 My thoughts exactly, especially now that she is terrified to go back! But the doctor won't budge on the loading dose concept. > >From: " AngSabAlMom@... " <AngSabAlMom@...> > >Sent: Thu, March 10, 2011 5:39:20 AM >Subject: Re: First time IVIg > > >Hi , >This procedure sounds interesting may I ask what SCIG is and means? >Thanks so much! > > >In a message dated 3/10/2011 1:34:40 A.M. Eastern Standard Time, >bluetaelon@... writes: > >Poor thing, is SCIG an option for her? A lot of doc's are skipping the >loading >dose and going straight to weekly SCIG. It would save all the trauma of >the IV. > > > >________________________________ >From: SophieB <_celiabrent@..._ (mailto:celiabrent@...) > >_ _ (mailto: ) >Sent: Wed, March 9, 2011 10:27:21 PM >Subject: First time IVIg > >Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. >We >had her tested because, first and foremost, I have CVID, and she's been >sick s >lot and doesn't get over things easily. >She's seven yrs old, and hates the whole thing except for watching me do >my >Hizentra. >Her first infusion with Gammunex was 2 weeks ago. It was not good. It took >3 >tries to get and IV in. It was traumatic. Then there was a long wait for >the >product, increasing the anxiety. Once it was in, it started burning and >itching >so bad after an hour that she started flailing her arm around. Although >the IV >was taped in well, it must have come out, but nobody saw it, so it >continued to >pump IgG on the surface. They were going to reconnect her, but she was way >to >upset to start a new IV. What about doing a PICC line for this? >Thanks for any input! > >------------------------------------ > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole >responsibility of the poster and should not be taken as professional >advice. > >To unsubscribe -unsubscribegroups (DOT) >To search group archives go to: >_/messages_ >(/messages) ! Groups Links > >[Non-text portions of this message have been removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 SCIG is the same thing as SubQ, there's a really great video on youtube showing the entire process. He's using the set which leaves a tiny needle in the sites but you can also use a SofSet which leaves a tiny cath in place rather then a needle. It can often be a better choice for kids with very little body fat (skinny mini kids) or those with sensory issues. Don't worry about the amount of sites he's using, as they get older they need more IG so need to use more sites but kids usually use only 2-3 sites. You can only infuse so much IG per site, usually around 15ml although there are those who do more without a problem. ________________________________ From: " AngSabAlMom@... " <AngSabAlMom@...> Sent: Thu, March 10, 2011 3:39:20 AM Subject: Re: First time IVIg Hi , This procedure sounds interesting may I ask what SCIG is and means? Thanks so much! In a message dated 3/10/2011 1:34:40 A.M. Eastern Standard Time, bluetaelon@... writes: Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading dose and going straight to weekly SCIG. It would save all the trauma of the IV. ________________________________ From: SophieB <_celiabrent@..._ (mailto:celiabrent@...) > _ _ (mailto: ) Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: _/messages_ (/messages) ! Groups Links [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 3? I have never heard of that, is that really old school from when subq 1st came to the US? I've always heard 1 loading dose followed 7 days later by subq. ________________________________ From: Celia Brent <celiabrent@...> Sent: Thu, March 10, 2011 6:48:47 AM Subject: Re: First time IVIg I would be fine with going straight to sub q, but her doctor is holding onto the idea that you have to do three loading doses to get the child's levels up. I can't stand the idea of going back to the hospital for an infusion after what happened. On the calendar, it is in 2 weeks, though. I wish you luck in getting you other child tested. Maybe lightening didn't strike twice... : " mindy@... " <mindy@...> >Sent: Thu, March 10, 2011 8:21:52 AM >Subject: Re: First time IVIg > > >I agree with , about going straight to SubQ immunoglobulin in this >case. It will just take your dd longer to get to her optimum level of >IgG, but I wouldn't put my child through that experience again! Plus, >with watching you do it every week, she should be more comfortable with >subQ. > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It >has lots of info. I even found some videos on youtube informative before >my son did his first infusion. There are also lots of posts in the >history for this group--you can search the history for this topic >It is done every week, instead of once a month like IVIG, but for us it >works great--done in the comfort of our own home when it is convenient for >us, and with much fewer side effects > >Also, I asked about testing my other two dd, but the doctor said since >they are not really symptomatic (typical number of infections), we are not >going to right now. However, my dd11 has completely fallen off the growth >chart, so if her endo workup this month is negative, we will also test her >immune system. > >Wish us luck! is getting his first dose of Hizentra today, whenever >the nurse gets here to observe. We were no longer able to obtain >Vivaglobin in our area. I do not anticipate any problems > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little >> zebra. We had her tested because, first and foremost, I have CVID, and >> she's been sick s lot and doesn't get over things easily. >> She's seven yrs old, and hates the whole thing except for watching me do >> my Hizentra. >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It >> took 3 tries to get and IV in. It was traumatic. Then there was a long >> wait for the product, increasing the anxiety. Once it was in, it started >> burning and itching so bad after an hour that she started flailing her arm >> around. Although the IV was taped in well, it must have come out, but >> nobody saw it, so it continued to pump IgG on the surface. They were >> going to reconnect her, but she was way to upset to start a new IV. What >> about doing a PICC line for this? >> Thanks for any input! >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Depends on the deficiency/dysfunction and the patients clinical condition. Ursula - mom to Macey (CVID) On Mar 10, 2011, at 12:39 PM, <bluetaelon@...> wrote: > 3? I have never heard of that, is that really old school from when subq 1st came > to the US? I've always heard 1 loading dose followed 7 days later by subq. > > > > ________________________________ > From: Celia Brent <celiabrent@...> > > Sent: Thu, March 10, 2011 6:48:47 AM > Subject: Re: First time IVIg > > I would be fine with going straight to sub q, but her doctor is holding onto the > > idea that you have to do three loading doses to get the child's levels up. I > can't stand the idea of going back to the hospital for an infusion after what > happened. On the calendar, it is in 2 weeks, though. > I wish you luck in getting you other child tested. Maybe lightening didn't > strike twice... > : " mindy@... " <mindy@...> > > >Sent: Thu, March 10, 2011 8:21:52 AM > >Subject: Re: First time IVIg > > > > > >I agree with , about going straight to SubQ immunoglobulin in this > >case. It will just take your dd longer to get to her optimum level of > >IgG, but I wouldn't put my child through that experience again! Plus, > >with watching you do it every week, she should be more comfortable with > >subQ. > > > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It > >has lots of info. I even found some videos on youtube informative before > >my son did his first infusion. There are also lots of posts in the > >history for this group--you can search the history for this topic > >It is done every week, instead of once a month like IVIG, but for us it > >works great--done in the comfort of our own home when it is convenient for > >us, and with much fewer side effects > > > >Also, I asked about testing my other two dd, but the doctor said since > >they are not really symptomatic (typical number of infections), we are not > >going to right now. However, my dd11 has completely fallen off the growth > >chart, so if her endo workup this month is negative, we will also test her > >immune system. > > > >Wish us luck! is getting his first dose of Hizentra today, whenever > >the nurse gets here to observe. We were no longer able to obtain > >Vivaglobin in our area. I do not anticipate any problems > > > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > > > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little > >> zebra. We had her tested because, first and foremost, I have CVID, and > >> she's been sick s lot and doesn't get over things easily. > >> She's seven yrs old, and hates the whole thing except for watching me do > >> my Hizentra. > >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It > >> took 3 tries to get and IV in. It was traumatic. Then there was a long > >> wait for the product, increasing the anxiety. Once it was in, it started > >> burning and itching so bad after an hour that she started flailing her arm > >> around. Although the IV was taped in well, it must have come out, but > >> nobody saw it, so it continued to pump IgG on the surface. They were > >> going to reconnect her, but she was way to upset to start a new IV. What > >> about doing a PICC line for this? > >> Thanks for any input! > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Or go to SubQ which is MUCH easier for many kids. You will have to work that out but IV is only one option for us it has been FANTASTIC! BARBIE ________________________________ From: SophieB <celiabrent@...> Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 3 are NOT necessary to get the levels up. I would think of it this way. If she is already low and it takes 3 months to get her up then so be it. Just get it going. One loading dose is customary in most areas of this country. I personally have not heard of 3. BARBIE ________________________________ From: Celia Brent <celiabrent@...> Sent: Thu, March 10, 2011 6:48:47 AM Subject: Re: First time IVIg I would be fine with going straight to sub q, but her doctor is holding onto the idea that you have to do three loading doses to get the child's levels up. I can't stand the idea of going back to the hospital for an infusion after what happened. On the calendar, it is in 2 weeks, though. I wish you luck in getting you other child tested. Maybe lightening didn't strike twice... : " mindy@... " <mindy@...> >Sent: Thu, March 10, 2011 8:21:52 AM >Subject: Re: First time IVIg > > >I agree with , about going straight to SubQ immunoglobulin in this >case. It will just take your dd longer to get to her optimum level of >IgG, but I wouldn't put my child through that experience again! Plus, >with watching you do it every week, she should be more comfortable with >subQ. > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It >has lots of info. I even found some videos on youtube informative before >my son did his first infusion. There are also lots of posts in the >history for this group--you can search the history for this topic >It is done every week, instead of once a month like IVIG, but for us it >works great--done in the comfort of our own home when it is convenient for >us, and with much fewer side effects > >Also, I asked about testing my other two dd, but the doctor said since >they are not really symptomatic (typical number of infections), we are not >going to right now. However, my dd11 has completely fallen off the growth >chart, so if her endo workup this month is negative, we will also test her >immune system. > >Wish us luck! is getting his first dose of Hizentra today, whenever >the nurse gets here to observe. We were no longer able to obtain >Vivaglobin in our area. I do not anticipate any problems > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little >> zebra. We had her tested because, first and foremost, I have CVID, and >> she's been sick s lot and doesn't get over things easily. >> She's seven yrs old, and hates the whole thing except for watching me do >> my Hizentra. >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It >> took 3 tries to get and IV in. It was traumatic. Then there was a long >> wait for the product, increasing the anxiety. Once it was in, it started >> burning and itching so bad after an hour that she started flailing her arm >> around. Although the IV was taped in well, it must have come out, but >> nobody saw it, so it continued to pump IgG on the surface. They were >> going to reconnect her, but she was way to upset to start a new IV. What >> about doing a PICC line for this? >> Thanks for any input! >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 CAll IDF and ask to see if he will talk with one of the advisors BARBIE ________________________________ From: Celia Brent <celiabrent@...> Sent: Thu, March 10, 2011 6:56:06 AM Subject: Re: First time IVIg My thoughts exactly, especially now that she is terrified to go back! But the doctor won't budge on the loading dose concept. > >From: " AngSabAlMom@... " <AngSabAlMom@...> > >Sent: Thu, March 10, 2011 5:39:20 AM >Subject: Re: First time IVIg > > >Hi , >This procedure sounds interesting may I ask what SCIG is and means? >Thanks so much! > > >In a message dated 3/10/2011 1:34:40 A.M. Eastern Standard Time, >bluetaelon@... writes: > >Poor thing, is SCIG an option for her? A lot of doc's are skipping the >loading >dose and going straight to weekly SCIG. It would save all the trauma of >the IV. > > > >________________________________ >From: SophieB <_celiabrent@..._ (mailto:celiabrent@...) > >_ _ (mailto: ) >Sent: Wed, March 9, 2011 10:27:21 PM >Subject: First time IVIg > >Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. >We >had her tested because, first and foremost, I have CVID, and she's been >sick s >lot and doesn't get over things easily. >She's seven yrs old, and hates the whole thing except for watching me do >my >Hizentra. >Her first infusion with Gammunex was 2 weeks ago. It was not good. It took >3 >tries to get and IV in. It was traumatic. Then there was a long wait for >the >product, increasing the anxiety. Once it was in, it started burning and >itching >so bad after an hour that she started flailing her arm around. Although >the IV >was taped in well, it must have come out, but nobody saw it, so it >continued to >pump IgG on the surface. They were going to reconnect her, but she was way >to >upset to start a new IV. What about doing a PICC line for this? >Thanks for any input! > >------------------------------------ > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole >responsibility of the poster and should not be taken as professional >advice. > >To unsubscribe -unsubscribegroups (DOT) >To search group archives go to: >_/messages_ >(/messages) ! Groups Links > >[Non-text portions of this message have been removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 " customary " Anyone seen any studies on new diagnosis and starting gamma infusions? Ursula On Mar 10, 2011, at 1:33 PM, Barbara Jimenez <mother5590@...> wrote: > 3 are NOT necessary to get the levels up. I would think of it this way. If she > is already low and it takes 3 months to get her up then so be it. Just get it > going. One loading dose is customary in most areas of this country. I personally > have not heard of 3. BARBIE > > ________________________________ > From: Celia Brent <celiabrent@...> > > Sent: Thu, March 10, 2011 6:48:47 AM > Subject: Re: First time IVIg > > I would be fine with going straight to sub q, but her doctor is holding onto the > > idea that you have to do three loading doses to get the child's levels up. I > can't stand the idea of going back to the hospital for an infusion after what > happened. On the calendar, it is in 2 weeks, though. > I wish you luck in getting you other child tested. Maybe lightening didn't > strike twice... > : " mindy@... " <mindy@...> > > >Sent: Thu, March 10, 2011 8:21:52 AM > >Subject: Re: First time IVIg > > > > > >I agree with , about going straight to SubQ immunoglobulin in this > >case. It will just take your dd longer to get to her optimum level of > >IgG, but I wouldn't put my child through that experience again! Plus, > >with watching you do it every week, she should be more comfortable with > >subQ. > > > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It > >has lots of info. I even found some videos on youtube informative before > >my son did his first infusion. There are also lots of posts in the > >history for this group--you can search the history for this topic > >It is done every week, instead of once a month like IVIG, but for us it > >works great--done in the comfort of our own home when it is convenient for > >us, and with much fewer side effects > > > >Also, I asked about testing my other two dd, but the doctor said since > >they are not really symptomatic (typical number of infections), we are not > >going to right now. However, my dd11 has completely fallen off the growth > >chart, so if her endo workup this month is negative, we will also test her > >immune system. > > > >Wish us luck! is getting his first dose of Hizentra today, whenever > >the nurse gets here to observe. We were no longer able to obtain > >Vivaglobin in our area. I do not anticipate any problems > > > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > > > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little > >> zebra. We had her tested because, first and foremost, I have CVID, and > >> she's been sick s lot and doesn't get over things easily. > >> She's seven yrs old, and hates the whole thing except for watching me do > >> my Hizentra. > >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It > >> took 3 tries to get and IV in. It was traumatic. Then there was a long > >> wait for the product, increasing the anxiety. Once it was in, it started > >> burning and itching so bad after an hour that she started flailing her arm > >> around. Although the IV was taped in well, it must have come out, but > >> nobody saw it, so it continued to pump IgG on the surface. They were > >> going to reconnect her, but she was way to upset to start a new IV. What > >> about doing a PICC line for this? > >> Thanks for any input! > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 We are able to use 30 per site without any problems. Lucas, 15, Sub Q, CVID, Asthma etc. BARBIE ________________________________ From: <bluetaelon@...> Sent: Thu, March 10, 2011 9:31:11 AM Subject: Re: First time IVIg SCIG is the same thing as SubQ, there's a really great video on youtube showing the entire process. He's using the set which leaves a tiny needle in the sites but you can also use a SofSet which leaves a tiny cath in place rather then a needle. It can often be a better choice for kids with very little body fat (skinny mini kids) or those with sensory issues. Don't worry about the amount of sites he's using, as they get older they need more IG so need to use more sites but kids usually use only 2-3 sites. You can only infuse so much IG per site, usually around 15ml although there are those who do more without a problem. ________________________________ From: " AngSabAlMom@... " <AngSabAlMom@...> Sent: Thu, March 10, 2011 3:39:20 AM Subject: Re: First time IVIg Hi , This procedure sounds interesting may I ask what SCIG is and means? Thanks so much! In a message dated 3/10/2011 1:34:40 A.M. Eastern Standard Time, bluetaelon@... writes: Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading dose and going straight to weekly SCIG. It would save all the trauma of the IV. ________________________________ From: SophieB <_celiabrent@..._ (mailto:celiabrent@...) > _ _ (mailto: ) Sent: Wed, March 9, 2011 10:27:21 PM Subject: First time IVIg Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We had her tested because, first and foremost, I have CVID, and she's been sick s lot and doesn't get over things easily. She's seven yrs old, and hates the whole thing except for watching me do my Hizentra. Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 tries to get and IV in. It was traumatic. Then there was a long wait for the product, increasing the anxiety. Once it was in, it started burning and itching so bad after an hour that she started flailing her arm around. Although the IV was taped in well, it must have come out, but nobody saw it, so it continued to pump IgG on the surface. They were going to reconnect her, but she was way to upset to start a new IV. What about doing a PICC line for this? Thanks for any input! ------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: _/messages_ (/messages) ! Groups Links [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 No it is anecdotal info that I use as " Customary " based on talking to others and watching the posts. No I have not seen any articles anywhere at this time. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Thu, March 10, 2011 10:40:31 AM Subject: Re: First time IVIg " customary " Anyone seen any studies on new diagnosis and starting gamma infusions? Ursula On Mar 10, 2011, at 1:33 PM, Barbara Jimenez <mother5590@...> wrote: > 3 are NOT necessary to get the levels up. I would think of it this way. If she > is already low and it takes 3 months to get her up then so be it. Just get it > going. One loading dose is customary in most areas of this country. I >personally > > have not heard of 3. BARBIE > > ________________________________ > From: Celia Brent <celiabrent@...> > > Sent: Thu, March 10, 2011 6:48:47 AM > Subject: Re: First time IVIg > > I would be fine with going straight to sub q, but her doctor is holding onto >the > > > idea that you have to do three loading doses to get the child's levels up. I > can't stand the idea of going back to the hospital for an infusion after what > happened. On the calendar, it is in 2 weeks, though. > I wish you luck in getting you other child tested. Maybe lightening didn't > strike twice... > : " mindy@... " <mindy@...> > > >Sent: Thu, March 10, 2011 8:21:52 AM > >Subject: Re: First time IVIg > > > > > >I agree with , about going straight to SubQ immunoglobulin in this > >case. It will just take your dd longer to get to her optimum level of > >IgG, but I wouldn't put my child through that experience again! Plus, > >with watching you do it every week, she should be more comfortable with > >subQ. > > > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It > >has lots of info. I even found some videos on youtube informative before > >my son did his first infusion. There are also lots of posts in the > >history for this group--you can search the history for this topic > >It is done every week, instead of once a month like IVIG, but for us it > >works great--done in the comfort of our own home when it is convenient for > >us, and with much fewer side effects > > > >Also, I asked about testing my other two dd, but the doctor said since > >they are not really symptomatic (typical number of infections), we are not > >going to right now. However, my dd11 has completely fallen off the growth > >chart, so if her endo workup this month is negative, we will also test her > >immune system. > > > >Wish us luck! is getting his first dose of Hizentra today, whenever > >the nurse gets here to observe. We were no longer able to obtain > >Vivaglobin in our area. I do not anticipate any problems > > > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > > > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little > >> zebra. We had her tested because, first and foremost, I have CVID, and > >> she's been sick s lot and doesn't get over things easily. > >> She's seven yrs old, and hates the whole thing except for watching me do > >> my Hizentra. > >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It > >> took 3 tries to get and IV in. It was traumatic. Then there was a long > >> wait for the product, increasing the anxiety. Once it was in, it started > >> burning and itching so bad after an hour that she started flailing her arm > >> around. Although the IV was taped in well, it must have come out, but > >> nobody saw it, so it continued to pump IgG on the surface. They were > >> going to reconnect her, but she was way to upset to start a new IV. What > >> about doing a PICC line for this? > >> Thanks for any input! > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 No it is anecdotal info that I use as " Customary " based on talking to others and watching the posts. No I have not seen any articles anywhere at this time. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Thu, March 10, 2011 10:40:31 AM Subject: Re: First time IVIg " customary " Anyone seen any studies on new diagnosis and starting gamma infusions? Ursula On Mar 10, 2011, at 1:33 PM, Barbara Jimenez <mother5590@...> wrote: > 3 are NOT necessary to get the levels up. I would think of it this way. If she > is already low and it takes 3 months to get her up then so be it. Just get it > going. One loading dose is customary in most areas of this country. I >personally > > have not heard of 3. BARBIE > > ________________________________ > From: Celia Brent <celiabrent@...> > > Sent: Thu, March 10, 2011 6:48:47 AM > Subject: Re: First time IVIg > > I would be fine with going straight to sub q, but her doctor is holding onto >the > > > idea that you have to do three loading doses to get the child's levels up. I > can't stand the idea of going back to the hospital for an infusion after what > happened. On the calendar, it is in 2 weeks, though. > I wish you luck in getting you other child tested. Maybe lightening didn't > strike twice... > : " mindy@... " <mindy@...> > > >Sent: Thu, March 10, 2011 8:21:52 AM > >Subject: Re: First time IVIg > > > > > >I agree with , about going straight to SubQ immunoglobulin in this > >case. It will just take your dd longer to get to her optimum level of > >IgG, but I wouldn't put my child through that experience again! Plus, > >with watching you do it every week, she should be more comfortable with > >subQ. > > > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It > >has lots of info. I even found some videos on youtube informative before > >my son did his first infusion. There are also lots of posts in the > >history for this group--you can search the history for this topic > >It is done every week, instead of once a month like IVIG, but for us it > >works great--done in the comfort of our own home when it is convenient for > >us, and with much fewer side effects > > > >Also, I asked about testing my other two dd, but the doctor said since > >they are not really symptomatic (typical number of infections), we are not > >going to right now. However, my dd11 has completely fallen off the growth > >chart, so if her endo workup this month is negative, we will also test her > >immune system. > > > >Wish us luck! is getting his first dose of Hizentra today, whenever > >the nurse gets here to observe. We were no longer able to obtain > >Vivaglobin in our area. I do not anticipate any problems > > > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > > > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little > >> zebra. We had her tested because, first and foremost, I have CVID, and > >> she's been sick s lot and doesn't get over things easily. > >> She's seven yrs old, and hates the whole thing except for watching me do > >> my Hizentra. > >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It > >> took 3 tries to get and IV in. It was traumatic. Then there was a long > >> wait for the product, increasing the anxiety. Once it was in, it started > >> burning and itching so bad after an hour that she started flailing her arm > >> around. Although the IV was taped in well, it must have come out, but > >> nobody saw it, so it continued to pump IgG on the surface. They were > >> going to reconnect her, but she was way to upset to start a new IV. What > >> about doing a PICC line for this? > >> Thanks for any input! > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 This report from WHO says starting straight to SCIG is pretty common http://archives.who.int/eml/expcom/children/Applications/IMMUNO/SCIG_EMEA.pdf about 20% of the kids in the research study started straight with SCIG skipping the loading dose. ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Thu, March 10, 2011 10:40:31 AM Subject: Re: First time IVIg " customary " Anyone seen any studies on new diagnosis and starting gamma infusions? Ursula On Mar 10, 2011, at 1:33 PM, Barbara Jimenez <mother5590@...> wrote: > 3 are NOT necessary to get the levels up. I would think of it this way. If she > is already low and it takes 3 months to get her up then so be it. Just get it > going. One loading dose is customary in most areas of this country. I >personally > > have not heard of 3. BARBIE > > ________________________________ > From: Celia Brent <celiabrent@...> > > Sent: Thu, March 10, 2011 6:48:47 AM > Subject: Re: First time IVIg > > I would be fine with going straight to sub q, but her doctor is holding onto >the > > > idea that you have to do three loading doses to get the child's levels up. I > can't stand the idea of going back to the hospital for an infusion after what > happened. On the calendar, it is in 2 weeks, though. > I wish you luck in getting you other child tested. Maybe lightening didn't > strike twice... > : " mindy@... " <mindy@...> > > >Sent: Thu, March 10, 2011 8:21:52 AM > >Subject: Re: First time IVIg > > > > > >I agree with , about going straight to SubQ immunoglobulin in this > >case. It will just take your dd longer to get to her optimum level of > >IgG, but I wouldn't put my child through that experience again! Plus, > >with watching you do it every week, she should be more comfortable with > >subQ. > > > >Angie, look up Subcutaneous immunoglobulin on the Hizentra website. It > >has lots of info. I even found some videos on youtube informative before > >my son did his first infusion. There are also lots of posts in the > >history for this group--you can search the history for this topic > >It is done every week, instead of once a month like IVIG, but for us it > >works great--done in the comfort of our own home when it is convenient for > >us, and with much fewer side effects > > > >Also, I asked about testing my other two dd, but the doctor said since > >they are not really symptomatic (typical number of infections), we are not > >going to right now. However, my dd11 has completely fallen off the growth > >chart, so if her endo workup this month is negative, we will also test her > >immune system. > > > >Wish us luck! is getting his first dose of Hizentra today, whenever > >the nurse gets here to observe. We were no longer able to obtain > >Vivaglobin in our area. I do not anticipate any problems > > > >Mindy, mom of , 9 next week!, asthma, CVID, autism+ > > > >> Hi everyone! I am new here. I am a Mom to a newly diagnosed little > >> zebra. We had her tested because, first and foremost, I have CVID, and > >> she's been sick s lot and doesn't get over things easily. > >> She's seven yrs old, and hates the whole thing except for watching me do > >> my Hizentra. > >> Her first infusion with Gammunex was 2 weeks ago. It was not good. It > >> took 3 tries to get and IV in. It was traumatic. Then there was a long > >> wait for the product, increasing the anxiety. Once it was in, it started > >> burning and itching so bad after an hour that she started flailing her arm > >> around. Although the IV was taped in well, it must have come out, but > >> nobody saw it, so it continued to pump IgG on the surface. They were > >> going to reconnect her, but she was way to upset to start a new IV. What > >> about doing a PICC line for this? > >> Thanks for any input! > >> > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Sorry to here about her iv trouble. We had the exact problem with our 1st time. It took them 3 tries to get iv in with poor jake screaming the whole time. We are going for 2nd next week and I'm worried for him I hope they let us switch to hizentra soon. The insurancew wouldn't allow it until we did this first ! Good luck ~justine Mom to jacob 5 (pid) > > Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading > dose and going straight to weekly SCIG. It would save all the trauma of the IV. > > > > > > > ________________________________ > From: SophieB <celiabrent@...> > > Sent: Wed, March 9, 2011 10:27:21 PM > Subject: First time IVIg > > Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We > had her tested because, first and foremost, I have CVID, and she's been sick s > lot and doesn't get over things easily. > She's seven yrs old, and hates the whole thing except for watching me do my > Hizentra. > Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 > tries to get and IV in. It was traumatic. Then there was a long wait for the > product, increasing the anxiety. Once it was in, it started burning and itching > so bad after an hour that she started flailing her arm around. Although the IV > was taped in well, it must have come out, but nobody saw it, so it continued to > pump IgG on the surface. They were going to reconnect her, but she was way to > upset to start a new IV. What about doing a PICC line for this? > Thanks for any input! > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Sorry to here about her iv trouble. We had the exact problem with our 1st time. It took them 3 tries to get iv in with poor jake screaming the whole time. We are going for 2nd next week and I'm worried for him I hope they let us switch to hizentra soon. The insurancew wouldn't allow it until we did this first ! Good luck ~justine Mom to jacob 5 (pid) > > Poor thing, is SCIG an option for her? A lot of doc's are skipping the loading > dose and going straight to weekly SCIG. It would save all the trauma of the IV. > > > > > > > ________________________________ > From: SophieB <celiabrent@...> > > Sent: Wed, March 9, 2011 10:27:21 PM > Subject: First time IVIg > > Hi everyone! I am new here. I am a Mom to a newly diagnosed little zebra. We > had her tested because, first and foremost, I have CVID, and she's been sick s > lot and doesn't get over things easily. > She's seven yrs old, and hates the whole thing except for watching me do my > Hizentra. > Her first infusion with Gammunex was 2 weeks ago. It was not good. It took 3 > tries to get and IV in. It was traumatic. Then there was a long wait for the > product, increasing the anxiety. Once it was in, it started burning and itching > so bad after an hour that she started flailing her arm around. Although the IV > was taped in well, it must have come out, but nobody saw it, so it continued to > pump IgG on the surface. They were going to reconnect her, but she was way to > upset to start a new IV. What about doing a PICC line for this? > Thanks for any input! > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken as professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
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