Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM  Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Micropore/paper tape will hold the needles in and doesn't hurt coming off. Rubbing an alcohol wipe over the tagaderm and waiting 15 seconds or so will cause it to bubble up and release as well. ________________________________ From: Sue Bordelon <sudubo@...> Sent: Sat, January 15, 2011 3:29:36 PM Subject: Re: First Sub Q done Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Or you can get adhesive remover. OR I do not remove the edging so it is easier to leave it on and grab it to remove. My son likes that better. So basically you take Part of it off. BARBIE ________________________________ From: <bluetaelon@...> Sent: Sat, January 15, 2011 3:38:00 PM Subject: Re: First Sub Q done Micropore/paper tape will hold the needles in and doesn't hurt coming off. Rubbing an alcohol wipe over the tagaderm and waiting 15 seconds or so will cause it to bubble up and release as well. ________________________________ From: Sue Bordelon <sudubo@...> Sent: Sat, January 15, 2011 3:29:36 PM Subject: Re: First Sub Q done Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Or you can get adhesive remover. OR I do not remove the edging so it is easier to leave it on and grab it to remove. My son likes that better. So basically you take Part of it off. BARBIE ________________________________ From: <bluetaelon@...> Sent: Sat, January 15, 2011 3:38:00 PM Subject: Re: First Sub Q done Micropore/paper tape will hold the needles in and doesn't hurt coming off. Rubbing an alcohol wipe over the tagaderm and waiting 15 seconds or so will cause it to bubble up and release as well. ________________________________ From: Sue Bordelon <sudubo@...> Sent: Sat, January 15, 2011 3:29:36 PM Subject: Re: First Sub Q done Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Great news! We use hypafix tape (in tiny strips..1/2 inch by 3 inches). I make an " X " over the site and place 1 extra piece over tubing and against skin...to prevent lil bro from pulling the tubing. Hypafix comes off easily w/ adhesive remover. (Tagederm doesn't work w/ adhesive remover and it can " burn " sensitive skin). Mom to Dani on sub-q x 5 years+. Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ First Sub Q done Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks ! will use the paper tape...sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Hey there! We have been doing subq for over 2 years now with Vivaglobin. We love it! We did IVIG for 6 months with nothing but horrible side effects. We do 2 sites and we go next to the belly button. The belly is the only place my daughter (who is 5) likes to do it. She said doing it in her legs hurt way too much. We use Emela cream an hour before we infuse. We have had a lot of problems with the tegaderms too. We found one that we like. It is very thin and easy to get off when we are done. We usually fold in one corner of it, so it is easier to grab onto to take off. The brand we use is 3M 1624W they are 2 3/8 x 2 3/4 in. These are the only kind we can use. Ashlynn has a really bad reaction to adhesives. Ashlynn actually takes her own tegaderms and needles out when we are done. We try to give her as much control as we can. It seems to go much smoother if we let her pick which side to start first, let her take the needles out, and we let her turn her machine on. If I can be of any assistance, please feel free to ask away. Take care, ---- Sue Bordelon <sudubo@...> wrote: > Yeah, so glad to hear ya'll started it....what a relief.... > > e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. > > Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? > > Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. > > A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? > > So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. > > Sue > > > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 , did ya'll get that Ped pack from CSL Bering? They have the kid stuff in it? well, they have this Parent 2 parent service...I had signed up for it and this nice rep called, a dad who has 2 kids on Hizentra...he told me some hints...he gives the kids ice cream during the infusion...so they have a good association with the Subq, pleasant distraction, and different little hints to make it easier for them and more able to tolerate it. They also sent a little furry ape, like the IGI V bear, e adores him, held him every IVIG he had. Maybe that parent to parent talk line may help.... Also, what size were the needles? I told Accredo e is skinny, and she put the 6mm needles with the supplies. also the thinnest gauge they have. We use the EMLA cream like we used for his port access and I think that might work better than the spray maybe.....  hope these ideas help...sue From: Herzberg <skgcifamily@...> Subject: RE: First Sub Q done Date: Saturday, January 15, 2011, 11:55 PM  Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Many kids and my son in particular does VERY poorly with Benadryl. He gets VERY grumpy and has meltdowns. Just something to put in the back of your head if it starts to happen. It also makes some kids sleepy and that is not a good thing for a couple of days per week. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Sat, January 15, 2011 3:29:36 PM Subject: Re: First Sub Q done Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Many kids and my son in particular does VERY poorly with Benadryl. He gets VERY grumpy and has meltdowns. Just something to put in the back of your head if it starts to happen. It also makes some kids sleepy and that is not a good thing for a couple of days per week. BARBIE ________________________________ From: Sue Bordelon <sudubo@...> Sent: Sat, January 15, 2011 3:29:36 PM Subject: Re: First Sub Q done Yeah, so glad to hear ya'll started it....what a relief.... e just started his first Hizentra this week as well....And also with him, the darn Tegaderm was the worst part. I hate that stuff, but it holds so well, for short term things like this...we won't be using it next week either, I just hope the needles don't come out. Does anyone have suggestions for a good alternative for the Tegaderm, something that holds the needles in but doesn;t hurt so bad to take off? Do ya'll do the pre-med still? e's immunologist said to continue to use the Benadryl and Tylenol like we did with the IVIG...and he said to use Benadryl twice a day after if it itches. But the sites didn't itch, this first time anyway. A question to you and the group...our immunologist said NOT to use hot packs, he said he wanted it absorbed more slowly and the hot packs would increase the blood flow and make the absorption too fast and he might get side effects then, like the headaches. What do others do? So far, so good...I think we're going to like the Subq....well, I hope he doesn't freak out next dose, He had his routine before at the clinic with the IVIG to his port..same nurse, same reclining chair, same everything...and he has Asperger's so he loves routine....I was proud of him that he did ok with the first dose and the transition. Sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 we do not premedicate and really do not use anything on the site at all. but we have been doing it for several years so by now his body has gotten use to it. BARBIE ________________________________ From: Herzberg <skgcifamily@...> Sent: Sat, January 15, 2011 3:55:52 PM Subject: RE: First Sub Q done Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks ...I'm going to get some of that 3M tegaderm...great, thanks! Yes, e has a problem with reactions to most tapes too. You made a good point about giving them some control in the whole process...I need to do that, thanks for bringing that up, I never even considered that...great ideas...hugs Sue > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks ...I'm going to get some of that 3M tegaderm...great, thanks! Yes, e has a problem with reactions to most tapes too. You made a good point about giving them some control in the whole process...I need to do that, thanks for bringing that up, I never even considered that...great ideas...hugs Sue > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Barbie, that's a good point, the benadryl may make them feel weird and they associate that with the infusion...huh...that's an important consideration....thanks sue From: Herzberg <skgcifamily@...> Subject: First Sub Q done Date: Saturday, January 15, 2011, 10:31 PM Caelan had his first sub Q Hizentra this morning. Overall it went well. They used ethyl chloride spray to freeze the sites first. We used three sites (infused 37ml) and they were the love handle and then going back toward his belly button. The worst part was getting the tegaderm off at the end which made him cry because it really pulled and hurt. Next time we are going to use skin prep and we won't use the tegaderm. The love handle spot is really puffed up and white looking. The center site looks almost like nothing and the one near his belly button is really puffed up as well. He freaked and thought he was having an allergic reaction, but once we explained that the liquid has to be absorbed he calmed down. We are putting heat packs on his belly to help with the absorption. He says it itches a lot. So, here's hoping no reactions after the fact and we can have a weekend without an ER visit! Mom to Caelan 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Sue, They did the 27 gauge 9mm needles I believe. We have the blue IVIG bear, but not the Hizentra kid kit. I think I'll order it though. I'll call the parent to parent line and get signed up as well. Thanks for the ideas. Oh and we used EMLA or LMX for his IV starts, but it had stopped working which is odd because we left it on for at least 30 mins and sometimes an hour and it didn't matter. _____ From: [mailto: ] On Behalf Of Sue Bordelon Sent: Saturday, January 15, 2011 6:07 PM Subject: RE: First Sub Q done , did ya'll get that Ped pack from CSL Bering? They have the kid stuff in it? well, they have this Parent 2 parent service...I had signed up for it and this nice rep called, a dad who has 2 kids on Hizentra...he told me some hints...he gives the kids ice cream during the infusion...so they have a good association with the Subq, pleasant distraction, and different little hints to make it easier for them and more able to tolerate it. They also sent a little furry ape, like the IGI V bear, e adores him, held him every IVIG he had. Maybe that parent to parent talk line may help.... Also, what size were the needles? I told Accredo e is skinny, and she put the 6mm needles with the supplies. also the thinnest gauge they have. We use the EMLA cream like we used for his port access and I think that might work better than the spray maybe..... hope these ideas help...sue From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> > Subject: RE: First Sub Q done <mailto:%40> Date: Saturday, January 15, 2011, 11:55 PM Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 , the needles they put in e's kit are 29g and 6mm So maybe ya'll could get the smaller needles....sue From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> > Subject: RE: First Sub Q done <mailto:%40> Date: Saturday, January 15, 2011, 11:55 PM Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Emla is supposed to be left on for 1 hour for minor procedures and 2 hours for more invasive. We have to leave it on for 2 hours for both IV's and SCIG. I'm not surprised they felt it at the 30 min mark. I know my daughter feels it if left less then 2 hours. ________________________________ From: Herzberg <skgcifamily@...> Sent: Sat, January 15, 2011 4:21:20 PM Subject: RE: First Sub Q done Sue, They did the 27 gauge 9mm needles I believe. We have the blue IVIG bear, but not the Hizentra kid kit. I think I'll order it though. I'll call the parent to parent line and get signed up as well. Thanks for the ideas. Oh and we used EMLA or LMX for his IV starts, but it had stopped working which is odd because we left it on for at least 30 mins and sometimes an hour and it didn't matter. _____ From: [mailto: ] On Behalf Of Sue Bordelon Sent: Saturday, January 15, 2011 6:07 PM Subject: RE: First Sub Q done , did ya'll get that Ped pack from CSL Bering? They have the kid stuff in it? well, they have this Parent 2 parent service...I had signed up for it and this nice rep called, a dad who has 2 kids on Hizentra...he told me some hints...he gives the kids ice cream during the infusion...so they have a good association with the Subq, pleasant distraction, and different little hints to make it easier for them and more able to tolerate it. They also sent a little furry ape, like the IGI V bear, e adores him, held him every IVIG he had. Maybe that parent to parent talk line may help.... Also, what size were the needles? I told Accredo e is skinny, and she put the 6mm needles with the supplies. also the thinnest gauge they have. We use the EMLA cream like we used for his port access and I think that might work better than the spray maybe..... hope these ideas help...sue From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> > Subject: RE: First Sub Q done <mailto:%40> Date: Saturday, January 15, 2011, 11:55 PM Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks for this ...e has a port too, we've always only left EMLA on for an hour, and he really feels the stick...he needs to get it accessed next week, we'll do the 2 hours now...thanks! OMG, I've gotten so many good ideas in the past hour from this group!..Sue From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> > Subject: RE: First Sub Q done <mailto:%40> Date: Saturday, January 15, 2011, 11:55 PM Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks for this ...e has a port too, we've always only left EMLA on for an hour, and he really feels the stick...he needs to get it accessed next week, we'll do the 2 hours now...thanks! OMG, I've gotten so many good ideas in the past hour from this group!..Sue From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> > Subject: RE: First Sub Q done <mailto:%40> Date: Saturday, January 15, 2011, 11:55 PM Sue, Yes, we still did pre-meds. We did Tylenol and Benadryl. We did not do prednisone. I'm glad your infusion went well except the Tegaderm issue. Hope yours goes well next week too! I wasn't told anything about the hot packs from our doctor, but we are his first patient on Sub Q. The home health nurse that does a bunch of this said to do the hot packs. Caelan is freaking out and doesn't like the way the sites feel now and he does not want to do this again. I told him it will be better next time and way better overall, but he's not in any mood to hear it right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 , Wow, thanks for the info. We will leave it on much longer if we go that route again. _____ From: [mailto: ] On Behalf Of Sent: Saturday, January 15, 2011 6:30 PM Subject: Re: First Sub Q done Emla is supposed to be left on for 1 hour for minor procedures and 2 hours for more invasive. We have to leave it on for 2 hours for both IV's and SCIG. I'm not surprised they felt it at the 30 min mark. I know my daughter feels it if left less then 2 hours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 , Wow, thanks for the info. We will leave it on much longer if we go that route again. _____ From: [mailto: ] On Behalf Of Sent: Saturday, January 15, 2011 6:30 PM Subject: Re: First Sub Q done Emla is supposed to be left on for 1 hour for minor procedures and 2 hours for more invasive. We have to leave it on for 2 hours for both IV's and SCIG. I'm not surprised they felt it at the 30 min mark. I know my daughter feels it if left less then 2 hours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 So glad he did well with the first time, Sue! It will get better for Caelan, as he gets used to what to expect... we use 's regular antihistamines (2 kinds) and Naproxen for premeds (he has adverse reactions to benadryl, ibuprofen, and tylenol). We tried to go without the Naproxen, but he got a migraine, so he definitely needs the premeds for his subQ. It also decreases the inflammation at the infusion sites, so you could always ask about using Advil instead of Tylenol. I have used the thin cloth tape to stick the needles down in a pinch (ours also have sticky circles attached to the needles), but is so wiggly, that the tape didn't keep the needles down. I, too, leave a folded edge to more easily pick up the tegaderm. And, yeah, pulling the tegaderm off the swollen site does hurt, so I keep one hand pulling the tegaderm, and one hand holding the skin in place. He also uses 27 gauge 6mm needles (quad set). We went to a quad set because it hurt less to have the Ig distributed to four sites instead of three. I have used ice on an infusing site in a pinch, but no more than 2-3 minutes at a time. I have not needed to do that since we slowed the infusion down (he gets it over 1 hr 45 minutes) and changed to 4 needles. He prefers more needles over the larger swellings. He has been doing it for 30 weeks plus now, and it took at least 4 months to get all of the fine tuning down pat I also give him a choice of sites that I have chosen, i.e. do you want it here? or here?, and then stick him whichever one he chooses. He is sooooo skinny that only his legs will work, so we use the insides, ousides, and the tops of his thighs. He is currently doing Vivaglobin, but will switch to Hizentra when it is available here. Mindy, mom of , 8, who has low verbal autism, CVID, asthma, multiple allergies, GI problems, and muscle pain and weakness... > Yeah, so glad to hear ya'll started it....what a relief.... > > e just started his first Hizentra this week as well....And also with > him, the darn Tegaderm was the worst part. I hate that stuff, but it holds > so well, for short term things like this...we won't be using it next week > either, I just hope the needles don't come out. > > Does anyone have suggestions for a good alternative for the Tegaderm, > something that holds the needles in but doesn;t hurt so bad to take off? > > Do ya'll do the pre-med still? e's immunologist said to continue to > use the Benadryl and Tylenol like we did with the IVIG...and he said to > use Benadryl twice a day after if it itches. But the sites didn't itch, > this first time anyway. > > A question to you and the group...our immunologist said NOT to use hot > packs, he said he wanted it absorbed more slowly and the hot packs would > increase the blood flow and make the absorption too fast and he might get > side effects then, like the headaches. What do others do? > > So far, so good...I think we're going to like the Subq....well, I hope he > doesn't freak out next dose, He had his routine before at the clinic with > the IVIG to his port..same nurse, same reclining chair, same > everything...and he has Asperger's so he loves routine....I was proud of > him that he did ok with the first dose and the transition. > > Sue > > > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went > well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward > his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is > really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks Mindy, these are great ideas.I like the Advil possibility, decreased inflammation.... One nurse at the infusion center where e got the IVIG to his port used to get the Op site IV 3000 for him, because he had trouble with Tegaderm...anybody use this? thanks again...sue > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went > well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward > his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is > really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2011 Report Share Posted January 15, 2011 Thanks Mindy, these are great ideas.I like the Advil possibility, decreased inflammation.... One nurse at the infusion center where e got the IVIG to his port used to get the Op site IV 3000 for him, because he had trouble with Tegaderm...anybody use this? thanks again...sue > > From: Herzberg <skgcifamily@...> > Subject: First Sub Q done > > Date: Saturday, January 15, 2011, 10:31 PM > > > > > > > >  > > > > > > > > > > Caelan had his first sub Q Hizentra this morning. Overall it went > well. They > > used ethyl chloride spray to freeze the sites first. We used three sites > > (infused 37ml) and they were the love handle and then going back toward > his > > belly button. The worst part was getting the tegaderm off at the end which > > made him cry because it really pulled and hurt. Next time we are going to > > use skin prep and we won't use the tegaderm. The love handle spot is > really > > puffed up and white looking. The center site looks almost like nothing and > > the one near his belly button is really puffed up as well. He freaked and > > thought he was having an allergic reaction, but once we explained that the > > liquid has to be absorbed he calmed down. We are putting heat packs on his > > belly to help with the absorption. He says it itches a lot. So, here's > > hoping no reactions after the fact and we can have a weekend without an ER > > visit! > > > > > > > > Mom to Caelan 11 > > > > Quote Link to comment Share on other sites More sharing options...
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