Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Bring lots of things to keep her busy, portable DVD player, lots of movies, hand held video games, arts and crafts, enough to keep her busy at least 8 hours. My dd basically gets treated like a princess for the day with me being her personal servant. Makes for a VERY LONG day... I was so glad to switch to SCIG at home:) dd 8 CVID *who has to go back in for IVIG to restart the SCIG cycles because mommy sorta forgot a couple of infusions:( Advice for first IVIG > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > ------------------------------------ > > 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 January 10, 2009 Report Share Posted January 10, 2009 Bring lots of things to keep her busy, portable DVD player, lots of movies, hand held video games, arts and crafts, enough to keep her busy at least 8 hours. My dd basically gets treated like a princess for the day with me being her personal servant. Makes for a VERY LONG day... I was so glad to switch to SCIG at home:) dd 8 CVID *who has to go back in for IVIG to restart the SCIG cycles because mommy sorta forgot a couple of infusions:( Advice for first IVIG > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > ------------------------------------ > > 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 January 10, 2009 Report Share Posted January 10, 2009 I am so sorry life has been so hectic. Lucas did well today and I am praying for continued success with him. I sometimes feel so bad for him and yet know that I have to be strong to keep his life going in the right direction. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:11:46 AM Subject: Re: Advice for first IVIG Bring lots of things to keep her busy, portable DVD player, lots of movies, hand held video games, arts and crafts, enough to keep her busy at least 8 hours. My dd basically gets treated like a princess for the day with me being her personal servant. Makes for a VERY LONG day... I was so glad to switch to SCIG at home:) dd 8 CVID *who has to go back in for IVIG to restart the SCIG cycles because mommy sorta forgot a couple of infusions:( Advice for first IVIG > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > ------------ --------- --------- ------ > > 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 -unsubscribe@ groups. > To search group archives go to: > http://groups. / group// messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I'm so glad he did well! I know he's been putting you though hell lately trying to get infusions done. I have a feeling I will run into the same problems with when she gets older. As it is she has trouble understanding why she needs infusions, she's been so healthy the past 2 years since starting Ig she doesn't remember the hell before it. Wow, 2 years, I just realized, we've been doing this for 2.5 YEARS, it sure doesn't seem like it! Advice for first IVIG > >> Hi, >> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >> 15th. We'll be going to her pulmonologists office and doing it there. >> They said the first time it will go very slow because they want to >> make sure she doesn't have a reaction and to lessen the side-effects >> as much as possible. >> >> Cassidy is only 4 and she just had a port placed a week ago. I know >> despite the port and using EMLA cream she's going to freak out pretty >> badly about the needle and having the IV line hooked up. She's had >> several ports and hand IV lines in the past and always gets hysterical. >> >> What advice do you guys have for us? I'm really interested to hear any >> tips or cautions, any experiences you want to share or ideas for >> making this easier on her. I'd really appreciate the help and feedback! >> >> Thank you, >> Jenn >> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >> >> >> ------------ --------- --------- ------ >> >> 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 -unsubscribe@ groups. >> To search group archives go to: >> http://groups. / group// messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Jenn, my son is now 13 and he started IVIg at 31/2. Our doctor wanted us to do a trial before putting a port in to see if we could do in and out IVs and guess what in our case he has been a good stick and we never had one. He has been on Sub Q for 2 years and and has been refusing them because he does not want to be stuck by me for now. So we have returned to the doctors office to do them weekly .. Not IV but just to have the nurse stick him with the Sub Q needles. He did very well today and I am very proud of him. I wanted to tell you that we set it up with Lucas that he was KING of the DAY on his IV day. We did it every 3 weeks and he anticipated it happily. He knew it was the day he could get any food that he wanted ( we packed lots of snacks and he got to choose) and he got a soda and candy ( not normal at our house) and he was allowed to choose a movie and he was allowed to buy one gift up to $12 now the amount had risen from the initial $5 but we had found that the kinds of things he was playing with at the time usually were about $10 plus tax. For us this worked very well. He did not complain and he was able to tolerate it well enought even though he got stuck and sometimes more than once. It is interesting since I have had a MUCH harder time doing it with him at home because he was so use to the attention with the staff when we went in. Just keep the discussion open with her and give her as many choices as you can. It does not have to be a horrible traumatic experience for her. I would talk to her and prepare her and ask her to tell you ways that she thinks that would help her to handle it better. I know with my son bringing his stuffed animal was a must, as well as he had ritual around other things we did , like how to put the tornequet on and how and when to put the bandaid on etc. It was just a part of life after awhile. See if you can find a nurse that you like and work together to come up with ideas. My son still remembers one nurse and wants her to do it when me move back to WA state. Even though she must have stuck him over 100 times over the years. OH yeah, I always tell him it is OK to cry, etc but he must sit still and that also has always worked to give him some sense of control. She could also spend some time drawing her experience and afterwards tell you what she wants to do differently. Because you have a port it really should not be difficult if you can get her to be a part of the experience rather than fighting it. BARBIE Lucas 13, CVID, Bipolar etc. BARBIE ________________________________ From: tapestrymlp2 <tapestrymlp@...> Sent: Saturday, January 10, 2009 1:44:59 AM Subject: Advice for first IVIG Hi, Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. 15th. We'll be going to her pulmonologists office and doing it there. They said the first time it will go very slow because they want to make sure she doesn't have a reaction and to lessen the side-effects as much as possible. Cassidy is only 4 and she just had a port placed a week ago. I know despite the port and using EMLA cream she's going to freak out pretty badly about the needle and having the IV line hooked up. She's had several ports and hand IV lines in the past and always gets hysterical. What advice do you guys have for us? I'm really interested to hear any tips or cautions, any experiences you want to share or ideas for making this easier on her. I'd really appreciate the help and feedback! Thank you, Jenn Mom to Cassidy, 4yrs w/CF, G-tube & CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 THINK about almost 10 years. I have to realize that everything he is saying about not wanting me to stick him and that he wants his home to be safe and that he wants to separate his being sick to keep it at the Drs office makes a great deal of sense. I am proud of him for being able to express his concerns and feelings. I can see them thinking of me as an overindulgent mom who lets her kid get by with things but that is NOT what has been happening . This kid has been in emotional distress over this and I have to be willing to listen to him or he will never respect me or begin to see this as a part of his life. He is in so much denial about the illness and really truly would rather die than deal with it. We have been in counseling for 12 years so it is not that we have not spent a great deal of time and energy working with him about it. I just hope this will work for now. We will be returning to WA state in about 5 months and I have a good network of people that can do it for him up there. What are you doing up?? I am up with my 4mo old grandson trying to keep him out of the hospital> my daughter got a virus and was vomiting . He started at about 6 and has thrown up over 8 x soaking everything. He is nursing and has not kept a feeding down. I put her to bed after she pumped and I have been feeding him 10cc every 30 min for the past 3 hours and he is keeping it down for now. I am just praying that I can keep him hydrated enough to keep him out of the hospital. He is sleeping off and on but is a pretty sick little guy. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:31:00 AM Subject: Re: Advice for first IVIG I'm so glad he did well! I know he's been putting you though hell lately trying to get infusions done. I have a feeling I will run into the same problems with when she gets older. As it is she has trouble understanding why she needs infusions, she's been so healthy the past 2 years since starting Ig she doesn't remember the hell before it. Wow, 2 years, I just realized, we've been doing this for 2.5 YEARS, it sure doesn't seem like it! Advice for first IVIG > >> Hi, >> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >> 15th. We'll be going to her pulmonologists office and doing it there. >> They said the first time it will go very slow because they want to >> make sure she doesn't have a reaction and to lessen the side-effects >> as much as possible. >> >> Cassidy is only 4 and she just had a port placed a week ago. I know >> despite the port and using EMLA cream she's going to freak out pretty >> badly about the needle and having the IV line hooked up. She's had >> several ports and hand IV lines in the past and always gets hysterical. >> >> What advice do you guys have for us? I'm really interested to hear any >> tips or cautions, any experiences you want to share or ideas for >> making this easier on her. I'd really appreciate the help and feedback! >> >> Thank you, >> Jenn >> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >> >> >> ------------ --------- --------- ------ >> >> 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 -unsubscribe@ groups. >> To search group archives go to: >> http://groups. / group// messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 lol, we do the same with the junk food, she gets a soda as soon as the IV goes in and gets junk food she doesn't get at home. I didn't think about it earlier but you might find ordering Charlie's IVIG book from Baxter (free) helpful. I know we got it and it really helped dd to read it. Advice for first IVIG > > > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 We did years ago but his 13 now so it is not cool enough. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:49:02 AM Subject: Re: Advice for first IVIG lol, we do the same with the junk food, she gets a soda as soon as the IV goes in and gets junk food she doesn't get at home. I didn't think about it earlier but you might find ordering Charlie's IVIG book from Baxter (free) helpful. I know we got it and it really helped dd to read it. Advice for first IVIG > > > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Poor guy! It sucks with there sick, especially when there puking all over:( I'm up doing homework, I'm never going to get into the RT program if I don't pass this darn math class! Anyway, hope its just a 24 hour bug and everyone is fine tomorrow:) Advice for first IVIG >> >>> Hi, >>> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >>> 15th. We'll be going to her pulmonologists office and doing it there. >>> They said the first time it will go very slow because they want to >>> make sure she doesn't have a reaction and to lessen the side-effects >>> as much as possible. >>> >>> Cassidy is only 4 and she just had a port placed a week ago. I know >>> despite the port and using EMLA cream she's going to freak out pretty >>> badly about the needle and having the IV line hooked up. She's had >>> several ports and hand IV lines in the past and always gets hysterical. >>> >>> What advice do you guys have for us? I'm really interested to hear any >>> tips or cautions, any experiences you want to share or ideas for >>> making this easier on her. I'd really appreciate the help and feedback! >>> >>> Thank you, >>> Jenn >>> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >>> >>> >>> ------------ --------- --------- ------ >>> >>> 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 -unsubscribe@ groups. >>> To search group archives go to: >>> http://groups. / group// messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Maybe Lucas and I can write a book for older kids. I will talk to him. IF we could put it together about the process and be independent and the FEELINGS about it maybe it can help some other kids too. I will see what I can do. I may check with one of the drug companies to see if they can help us get it going. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:49:02 AM Subject: Re: Advice for first IVIG lol, we do the same with the junk food, she gets a soda as soon as the IV goes in and gets junk food she doesn't get at home. I didn't think about it earlier but you might find ordering Charlie's IVIG book from Baxter (free) helpful. I know we got it and it really helped dd to read it. Advice for first IVIG > > > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I saw a book a while back geared towards older kids/teens but I'm drawing a blank on the title. Maybe the ABC book on Baxters website? Advice for first IVIG >> >> >> Hi, >> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >> 15th. We'll be going to her pulmonologists office and doing it there. >> They said the first time it will go very slow because they want to >> make sure she doesn't have a reaction and to lessen the side-effects >> as much as possible. >> >> Cassidy is only 4 and she just had a port placed a week ago. I know >> despite the port and using EMLA cream she's going to freak out pretty >> badly about the needle and having the IV line hooked up. She's had >> several ports and hand IV lines in the past and always gets hysterical. >> >> What advice do you guys have for us? I'm really interested to hear any >> tips or cautions, any experiences you want to share or ideas for >> making this easier on her. I'd really appreciate the help and feedback! >> >> Thank you, >> Jenn >> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Found it! http://www.immunedisease.com/patients-and-families/help-and-support/baxter-resou\ rces/celinas-story.html Knew I saw it some where! I'm heading to bed, my eyes are bugging out and my head is killing me. Hope your night improves! Advice for first IVIG >> >> >> Hi, >> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >> 15th. We'll be going to her pulmonologists office and doing it there. >> They said the first time it will go very slow because they want to >> make sure she doesn't have a reaction and to lessen the side-effects >> as much as possible. >> >> Cassidy is only 4 and she just had a port placed a week ago. I know >> despite the port and using EMLA cream she's going to freak out pretty >> badly about the needle and having the IV line hooked up. She's had >> several ports and hand IV lines in the past and always gets hysterical. >> >> What advice do you guys have for us? I'm really interested to hear any >> tips or cautions, any experiences you want to share or ideas for >> making this easier on her. I'd really appreciate the help and feedback! >> >> Thank you, >> Jenn >> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 mine 2 but not going to stop if i can keep him out of the hospital. He is alert and happy most of the time but only one wet diaper since yesterday afternoon. So we are on the border here. He is taking breastmilk by syringe at 10cc per time but if he nurses he throws it up. talk again soon thanks for keeping me company. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 3:13:06 AM Subject: Re: Advice for first IVIG Found it! http://www.immunedi sease.com/ patients- and-families/ help-and- support/baxter- resources/ celinas-story. html Knew I saw it some where! I'm heading to bed, my eyes are bugging out and my head is killing me. Hope your night improves! Advice for first IVIG >> >> >> Hi, >> Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >> 15th. We'll be going to her pulmonologists office and doing it there. >> They said the first time it will go very slow because they want to >> make sure she doesn't have a reaction and to lessen the side-effects >> as much as possible. >> >> Cassidy is only 4 and she just had a port placed a week ago. I know >> despite the port and using EMLA cream she's going to freak out pretty >> badly about the needle and having the IV line hooked up. She's had >> several ports and hand IV lines in the past and always gets hysterical. >> >> What advice do you guys have for us? I'm really interested to hear any >> tips or cautions, any experiences you want to share or ideas for >> making this easier on her. I'd really appreciate the help and feedback! >> >> Thank you, >> Jenn >> Mom to Cassidy, 4yrs w/CF, G-tube & CVID >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 (almost 7, with Hyper IgE - Job Syndrome) has been doing IVIG every 4 weeks for just over 6 months now. The best advice I received was get lots of fluids in - before, during and after. loves Gatorade so he gets Gatorade for the day before, during IVIG and after. This fattens up his veins for an easier poke, and reduces the chances of a headache, which he had the first few times. Also, I get him whatever he wants for breakfast out of the hospital cafeteria (usually hashbrowns) - that way he has some food in him before the IVIG starts (he is sometimes nauseated afterwards and doesn't want to eat) and also distracted before his poke. Our hospital plays non-stop movies, so that is a great distraction. For our first few trips I got him a new game for his gameboy each time, but that didn't work out so well lately because his IV is usually in his hand and he can't play during IVIG. Baxter makes a great IVIG scrapbook that you can order for free online. We had a great time taking pictures of all the steps of the procedure for his scrapbook and he still updates it with stickers. He really enjoyed showing his friends at school what goes on during the days he is away from school for IVIG. Good luck and I hope everything goes well. Kim, mom to (almost 7) >From: " tapestrymlp2 " <tapestrymlp@...> >Reply- > >Subject: Advice for first IVIG >Date: Sat, 10 Jan 2009 07:44:59 -0000 > >Hi, >Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. >15th. We'll be going to her pulmonologists office and doing it there. >They said the first time it will go very slow because they want to >make sure she doesn't have a reaction and to lessen the side-effects >as much as possible. > >Cassidy is only 4 and she just had a port placed a week ago. I know >despite the port and using EMLA cream she's going to freak out pretty >badly about the needle and having the IV line hooked up. She's had >several ports and hand IV lines in the past and always gets hysterical. > >What advice do you guys have for us? I'm really interested to hear any >tips or cautions, any experiences you want to share or ideas for >making this easier on her. I'd really appreciate the help and feedback! > >Thank you, >Jenn >Mom to Cassidy, 4yrs w/CF, G-tube & CVID > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Thanks for the tips! Jenn Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > Bring lots of things to keep her busy, portable DVD player, lots of movies, > hand held video games, arts and crafts, enough to keep her busy at least 8 > hours. My dd basically gets treated like a princess for the day with me > being her personal servant. Makes for a VERY LONG day... I was so glad to > switch to SCIG at home:) > > > dd 8 CVID *who has to go back in for IVIG to restart the SCIG cycles because > mommy sorta forgot a couple of infusions:( > > Advice for first IVIG > > > > Hi, > > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > > 15th. We'll be going to her pulmonologists office and doing it there. > > They said the first time it will go very slow because they want to > > make sure she doesn't have a reaction and to lessen the side-effects > > as much as possible. > > > > Cassidy is only 4 and she just had a port placed a week ago. I know > > despite the port and using EMLA cream she's going to freak out pretty > > badly about the needle and having the IV line hooked up. She's had > > several ports and hand IV lines in the past and always gets hysterical. > > > > What advice do you guys have for us? I'm really interested to hear any > > tips or cautions, any experiences you want to share or ideas for > > making this easier on her. I'd really appreciate the help and feedback! > > > > Thank you, > > Jenn > > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > > > > ------------------------------------ > > > > 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 January 10, 2009 Report Share Posted January 10, 2009 Thanks for the response and I am glad to hear Lucas did well with his SubQ at the doctor's office. I hope things get better soon for you! Jenn Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > Jenn, my son is now 13 and he started IVIg at 31/2. Our doctor wanted us to do a trial before putting a port in to see if we could do in and out IVs and guess what in our case he has been a good stick and we never had one. He has been on Sub Q for 2 years and and has been refusing them because he does not want to be stuck by me for now. So we have returned to the doctors office to do them weekly . Not IV but just to have the nurse stick him with the Sub Q needles. He did very well today and I am very proud of him. I wanted to tell you that we set it up with Lucas that he was KING of the DAY on his IV day. We did it every 3 weeks and he anticipated it happily. He knew it was the day he could get any food that he wanted ( we packed lots of snacks and he got to choose) and he got a soda and candy ( not normal at our house) and he was allowed to choose a movie and he was allowed to buy one gift up to $12 now the amount had risen from the initial $5 but we > had found that the kinds of things he was playing with at the time usually were about $10 plus tax. For us this worked very well. He did not complain and he was able to tolerate it well enought even though he got stuck and sometimes more than once. It is interesting since I have had a MUCH harder time doing it with him at home because he was so use to the attention with the staff when we went in. Just keep the discussion open with her and give her as many choices as you can. It does not have to be a horrible traumatic experience for her. I would talk to her and prepare her and ask her to tell you ways that she thinks that would help her to handle it better. I know with my son bringing his stuffed animal was a must, as well as he had ritual around other things we did , like how to put the tornequet on and how and when to put the bandaid on etc. It was just a part of life after awhile. See if you can find a nurse that you like and work together to come > up with ideas. My son still remembers one nurse and wants her to do it when me move back to WA state. Even though she must have stuck him over 100 times over the years. OH yeah, I always tell him it is OK to cry, etc but he must sit still and that also has always worked to give him some sense of control. She could also spend some time drawing her experience and afterwards tell you what she wants to do differently. Because you have a port it really should not be difficult if you can get her to be a part of the experience rather than fighting it. > BARBIE > Lucas 13, CVID, Bipolar etc. > > BARBIE > > > > > ________________________________ > From: tapestrymlp2 <tapestrymlp@...> > > Sent: Saturday, January 10, 2009 1:44:59 AM > Subject: Advice for first IVIG > > > Hi, > Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > 15th. We'll be going to her pulmonologists office and doing it there. > They said the first time it will go very slow because they want to > make sure she doesn't have a reaction and to lessen the side-effects > as much as possible. > > Cassidy is only 4 and she just had a port placed a week ago. I know > despite the port and using EMLA cream she's going to freak out pretty > badly about the needle and having the IV line hooked up. She's had > several ports and hand IV lines in the past and always gets hysterical. > > What advice do you guys have for us? I'm really interested to hear any > tips or cautions, any experiences you want to share or ideas for > making this easier on her. I'd really appreciate the help and feedback! > > Thank you, > Jenn > Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I've just ordered the scrapbook, thank you so much for that suggestion! Jenn Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > (almost 7, with Hyper IgE - Job Syndrome) has been doing IVIG every > 4 weeks for just over 6 months now. The best advice I received was get lots > of fluids in - before, during and after. loves Gatorade so he gets > Gatorade for the day before, during IVIG and after. This fattens up his > veins for an easier poke, and reduces the chances of a headache, which he > had the first few times. > > Also, I get him whatever he wants for breakfast out of the hospital > cafeteria (usually hashbrowns) - that way he has some food in him before the > IVIG starts (he is sometimes nauseated afterwards and doesn't want to eat) > and also distracted before his poke. Our hospital plays non-stop movies, so > that is a great distraction. For our first few trips I got him a new game > for his gameboy each time, but that didn't work out so well lately because > his IV is usually in his hand and he can't play during IVIG. > > Baxter makes a great IVIG scrapbook that you can order for free online. We > had a great time taking pictures of all the steps of the procedure for his > scrapbook and he still updates it with stickers. He really enjoyed showing > his friends at school what goes on during the days he is away from school > for IVIG. > > Good luck and I hope everything goes well. > > Kim, mom to (almost 7) > > > >From: " tapestrymlp2 " <tapestrymlp@...> > >Reply- > > > >Subject: Advice for first IVIG > >Date: Sat, 10 Jan 2009 07:44:59 -0000 > > > >Hi, > >Cassidy is scheduled for her first IGG transfusion next Thursday, Jan. > >15th. We'll be going to her pulmonologists office and doing it there. > >They said the first time it will go very slow because they want to > >make sure she doesn't have a reaction and to lessen the side-effects > >as much as possible. > > > >Cassidy is only 4 and she just had a port placed a week ago. I know > >despite the port and using EMLA cream she's going to freak out pretty > >badly about the needle and having the IV line hooked up. She's had > >several ports and hand IV lines in the past and always gets hysterical. > > > >What advice do you guys have for us? I'm really interested to hear any > >tips or cautions, any experiences you want to share or ideas for > >making this easier on her. I'd really appreciate the help and feedback! > > > >Thank you, > >Jenn > >Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Jenn, You are welcome and good luck on Thursday. Be sure to post how it went with Cassidy. Kim (mom to , 7, Hyper IgE - Job Syndrome) Quote Link to comment Share on other sites More sharing options...
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