Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Hi.. I don't post a whole lot. I have an almost 3.5 year old son, , with CVID. He gets 3 grams carimune NF subQ into 3 sites with a 27 gauge x 6 mm needle.. reading off the package here because really it means nothing to me. Today he was fine during the infusion except the last 5 mins he started complaining that one site hurt. The nurse checked it and noticed that that site was getting nothing and his other two sites were huge. Tonight his other two sites are very red. The redness is spreading out from the size of the discs that were on there.. but not much bigger. We are now 6 hours post infusion. No fever, the sites are not hot and they aren't swollen, just red. Any thoughts??? We have been doing infusions for almost two years and home subq for a little over a year and never had this happen. Amy, mom to Nick. 3 years old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Did you pre-medicate with Benadryl? My boys' sites turn red if they are not pre-medicated. Did the one side have a problem (link blocked/kinked)? ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com _____ From: [mailto: ] On Behalf Of Amy Bolich Sent: Monday, May 01, 2006 10:08 PM Subject: subq reaction? Hi.. I don't post a whole lot. I have an almost 3.5 year old son, , with CVID. He gets 3 grams carimune NF subQ into 3 sites with a 27 gauge x 6 mm needle.. reading off the package here because really it means nothing to me. Today he was fine during the infusion except the last 5 mins he started complaining that one site hurt. The nurse checked it and noticed that that site was getting nothing and his other two sites were huge. Tonight his other two sites are very red. The redness is spreading out from the size of the discs that were on there.. but not much bigger. We are now 6 hours post infusion. No fever, the sites are not hot and they aren't swollen, just red. Any thoughts??? We have been doing infusions for almost two years and home subq for a little over a year and never had this happen. Amy, mom to Nick. 3 years old CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Patti, Yes, he gets 1/2 tsp of hydroxizine and 1 tsp of predisolone before each infusion. I keep thinking too that the one line had to be kinked, there really is no other explination there. The nurse is sure that there was fluid going thru before and she flushed after and it went thru then too. But that site is fine.. obviously, nothing went in there hehehe. Nick's sites always turn red from the tape/tegaderm each infusion and are red tonight from that, but this redness from the disc on out is very new. Thanks, Amy, mom to Nick > Did you pre-medicate with Benadryl? My boys' sites turn red if they are > not > pre-medicated. Did the one side have a problem (link blocked/kinked)? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Patti, Yes, he gets 1/2 tsp of hydroxizine and 1 tsp of predisolone before each infusion. I keep thinking too that the one line had to be kinked, there really is no other explination there. The nurse is sure that there was fluid going thru before and she flushed after and it went thru then too. But that site is fine.. obviously, nothing went in there hehehe. Nick's sites always turn red from the tape/tegaderm each infusion and are red tonight from that, but this redness from the disc on out is very new. Thanks, Amy, mom to Nick > Did you pre-medicate with Benadryl? My boys' sites turn red if they are > not > pre-medicated. Did the one side have a problem (link blocked/kinked)? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Have you tried skin prep for the reaction to the tape and tegaderm? It has worked wonders for us! ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com _____ From: [mailto: ] On Behalf Of Amy Bolich Sent: Monday, May 01, 2006 11:05 PM Subject: Re: subq reaction? Patti, Yes, he gets 1/2 tsp of hydroxizine and 1 tsp of predisolone before each infusion. I keep thinking too that the one line had to be kinked, there really is no other explination there. The nurse is sure that there was fluid going thru before and she flushed after and it went thru then too. But that site is fine.. obviously, nothing went in there hehehe. Nick's sites always turn red from the tape/tegaderm each infusion and are red tonight from that, but this redness from the disc on out is very new. Thanks, Amy, mom to Nick > _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Have you tried skin prep for the reaction to the tape and tegaderm? It has worked wonders for us! ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com _____ From: [mailto: ] On Behalf Of Amy Bolich Sent: Monday, May 01, 2006 11:05 PM Subject: Re: subq reaction? Patti, Yes, he gets 1/2 tsp of hydroxizine and 1 tsp of predisolone before each infusion. I keep thinking too that the one line had to be kinked, there really is no other explination there. The nurse is sure that there was fluid going thru before and she flushed after and it went thru then too. But that site is fine.. obviously, nothing went in there hehehe. Nick's sites always turn red from the tape/tegaderm each infusion and are red tonight from that, but this redness from the disc on out is very new. Thanks, Amy, mom to Nick > _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Amy, 's leg sites always look bigger then his belly or flank sites.....the one site must have been kinked....that can happen... The redness can be normal, but it should fade....it could be that there is more in the site and hence the increase in redness....I would mark it with a pen and watch it...If it get's bigger at all call the doctor... Hope that helps... linda Quoting Amy Bolich <mom2lilnick@...>: > Hi.. I don't post a whole lot. I have an almost 3.5 year old son, , > with CVID. He gets 3 grams carimune NF subQ into 3 sites with a 27 gauge x 6 > mm needle.. reading off the package here because really it means nothing to > me. > > Today he was fine during the infusion except the last 5 mins he started > complaining that one site hurt. The nurse checked it and noticed that that > site was getting nothing and his other two sites were huge. > > Tonight his other two sites are very red. The redness is spreading out from > the size of the discs that were on there.. but not much bigger. We are now 6 > hours post infusion. No fever, the sites are not hot and they aren't > swollen, just red. > > Any thoughts??? We have been doing infusions for almost two years and home > subq for a little over a year and never had this happen. > > Amy, mom to Nick. 3 years old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Amy, 's leg sites always look bigger then his belly or flank sites.....the one site must have been kinked....that can happen... The redness can be normal, but it should fade....it could be that there is more in the site and hence the increase in redness....I would mark it with a pen and watch it...If it get's bigger at all call the doctor... Hope that helps... linda Quoting Amy Bolich <mom2lilnick@...>: > Hi.. I don't post a whole lot. I have an almost 3.5 year old son, , > with CVID. He gets 3 grams carimune NF subQ into 3 sites with a 27 gauge x 6 > mm needle.. reading off the package here because really it means nothing to > me. > > Today he was fine during the infusion except the last 5 mins he started > complaining that one site hurt. The nurse checked it and noticed that that > site was getting nothing and his other two sites were huge. > > Tonight his other two sites are very red. The redness is spreading out from > the size of the discs that were on there.. but not much bigger. We are now 6 > hours post infusion. No fever, the sites are not hot and they aren't > swollen, just red. > > Any thoughts??? We have been doing infusions for almost two years and home > subq for a little over a year and never had this happen. > > Amy, mom to Nick. 3 years old CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 I actually watched a lady do a sub-q push at the IDF meeting. She does it daily and just uses a butterfly needle -- no tape, no catheter, nothing -- just infuses for about 15 minutes and that's it. Her site turned bright red right where the lump was forming. She was unconcerned -- said it did it everytime and didn't hurt -- so, she just ignored it. I thought maybe everyone's did that. I'm not experienced with sub-q -- just thought it was interesting. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Amy - several weeks ago I mentioned to Macey's immunologist that parents were reporting site reactions. She asked me to ask the list what product was being used. The vast majority of parents responded with Carimmune. I reported this back to her. She has participated in subq and Vivaglobuin trials (just giving alittle history of her subq work). I'm hoping she'll report it on to the right people. You might think of reporting it to the Carimmune company. Ursula - mom to Macey (10,CVID) and (13) http://members.cox.net/maceyh Immune Deficiency Foundation http://www.primaryimmune.org Pediatric PID email list Modell Foundation http://jmfworld.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Thanks Patti, His nurse is looking into the skin prep as I type so we are more than likely going that route from now on. Upon further looking into things it appears that every few weeks his reaction to adhesives are more severe than others so the thought is that something is making him more " hyper-sensitive " some weeks than other weeks. Probably nothing to do at all with his infusions at all, just something else going on with him. This is probably just a bad week and he is probably reacting to the adhesive on the discs. Doesn't explain why there is nothing showing up on the other leg, but.. oh well, can't win them all I suppose. Thanks for all your suggestions. I do find it very interesting about the Carimmune tho. I have heard that our immuno only uses that if at all possible and Nick has never had any other reaction other than local, so not much of a reason to switch and go looking for trouble. His sites look almost exactly the same but it if it is just an adhesive reaction it will take about 10 days to go away. Thanks again, Amy, mom to Nick, 3 CVID > Have you tried skin prep for the reaction to the tape and tegaderm? It > has > worked wonders for us! > > > > ~Pattie~ Quote Link to comment Share on other sites More sharing options...
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