Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Deadra, What a rough go of it, I'm so sorry. I have heard that having it subq at home is so much nicer, less side effects. Try to get Chase to tank on liquids prior to his infusion next time. It well help so much if he does. If he can't get it at home, ask the iv nurse to mix fluids with his ivig. Hang in there, and I sure hope this helps Chase as much as it has helped my daughter. ' & a Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: Hello everyone. How was your holidays? Chase had his first IVIG on December 27th. All went well for that one. We returned on the 28th and he was fine for the treatment, then about 2-3 hours later complained of a headache. Dr. had mentioned that some of the side effects of having the wrong dose, or getting too much too soon was cranial pressure, cardiac arrest, and other horrible things. My husband I were so scared that Chase was having a negative reaction, especially when he complained of how bad his head hurt him in the back. We ended up rushing him down to his pediatrician where Chase got sick 3 times. His doctor was watching my son retch into the garbage can to make sure there was no blood in his vomit. ( How degrading.) He told us that since Chase had no reaction at the time of the infusion, that he thought it was a virus. His pedi rheumy told us the same thing when we contacted her about Chase's symptoms before heading down to his pediatrician. Chase proceeded to be sick in the car on the way home (thank god we had the forsight to bring a wastebasket) and then he was sick all night and the following day. He cried from his head hurting so much, he couldn't even lift it to throw up. By Saturday night he was feeling a little better, however he had a huge bloody nose. On Sunday he felt a little better, but still had 3 more nose bleeds. He went back down today for his third dose and there were no after effects, so my husband and I are breathing a huge sigh of relief. He is on 1.5kg/kilo of body weight. He has his next dose Feb. 1st and 2nd. His pedi rheumy called today to see how he was and said that they would try to get the following IVIG's done at home with a home health nurse. We are keeping our fingers crossed that this will work for Chase's arthritis and uveitis. Deadra and Chase 8 pauci and uveitis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 My daughter was receiving subQ, Vivaglobin, at home, for immune deficiency. She had done the IVIG for about 8 months prior to the subQ, which was SO much easier...less volume (no dilutents added), absorbed more slowly but took less time to infuse because you use multiple sites. After a couple of times with the home health nurse, we were allowed to be on our own (my teen daughter loved that!) - I would prep everything and she would put her needles in her abdomen...tiny...if you want more info, just ask...seemed to have less side effects...also, different brands can affect each child differently, as well as how well hydrated, rate of infusion, etc. Did they give him Benadryl beforehand? Or Advil? They used to give these until they determined she did not need the Benadryl... Any questions, don't hesitate to ask...I hope his next infusion goes smoothly. , 16, immune deficiency, unspecified arthritis, chronic daily migraine ' Taunton <lcdanceacademy@...> wrote: Deadra, What a rough go of it, I'm so sorry. I have heard that having it subq at home is so much nicer, less side effects. Try to get Chase to tank on liquids prior to his infusion next time. It well help so much if he does. If he can't get it at home, ask the iv nurse to mix fluids with his ivig. Hang in there, and I sure hope this helps Chase as much as it has helped my daughter. ' & a Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: Hello everyone. How was your holidays? Chase had his first IVIG on December 27th. All went well for that one. We returned on the 28th and he was fine for the treatment, then about 2-3 hours later complained of a headache. Dr. had mentioned that some of the side effects of having the wrong dose, or getting too much too soon was cranial pressure, cardiac arrest, and other horrible things. My husband I were so scared that Chase was having a negative reaction, especially when he complained of how bad his head hurt him in the back. We ended up rushing him down to his pediatrician where Chase got sick 3 times. His doctor was watching my son retch into the garbage can to make sure there was no blood in his vomit. ( How degrading.) He told us that since Chase had no reaction at the time of the infusion, that he thought it was a virus. His pedi rheumy told us the same thing when we contacted her about Chase's symptoms before heading down to his pediatrician. Chase proceeded to be sick in the car on the way home (thank god we had the forsight to bring a wastebasket) and then he was sick all night and the following day. He cried from his head hurting so much, he couldn't even lift it to throw up. By Saturday night he was feeling a little better, however he had a huge bloody nose. On Sunday he felt a little better, but still had 3 more nose bleeds. He went back down today for his third dose and there were no after effects, so my husband and I are breathing a huge sigh of relief. He is on 1.5kg/kilo of body weight. He has his next dose Feb. 1st and 2nd. His pedi rheumy called today to see how he was and said that they would try to get the following IVIG's done at home with a home health nurse. We are keeping our fingers crossed that this will work for Chase's arthritis and uveitis. Deadra and Chase 8 pauci and uveitis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 They have been giving him 375mg of Tylenol, and also enough Benadryl that it knocks him out for most of the infusion. By subq do you mean like a shot? He developed a psychosis from the methotrexate shots. It was horrible to put him through that. He has never had a problem with the infusions. Even when he had the Remicade, they would put the numbing shot in his vein first, he would clench, but they told him when the bee sting was coming. After that, for the IV's he would let them know which vein he thought was best and watch it being inserted. He has been extremely great for all of his infusions. He did much better this last time with his IVIG that he had yesterday. I am sure once the home health nurse comes, that I may have questions, so thankyou for answering them for me. Take care. Deadra nancy barnes <nancyb315@...> wrote: My daughter was receiving subQ, Vivaglobin, at home, for immune deficiency. She had done the IVIG for about 8 months prior to the subQ, which was SO much easier...less volume (no dilutents added), absorbed more slowly but took less time to infuse because you use multiple sites. After a couple of times with the home health nurse, we were allowed to be on our own (my teen daughter loved that!) - I would prep everything and she would put her needles in her abdomen...tiny...if you want more info, just ask...seemed to have less side effects...also, different brands can affect each child differently, as well as how well hydrated, rate of infusion, etc. Did they give him Benadryl beforehand? Or Advil? They used to give these until they determined she did not need the Benadryl... Any questions, don't hesitate to ask...I hope his next infusion goes smoothly. , 16, immune deficiency, unspecified arthritis, chronic daily migraine ' Taunton <lcdanceacademy@...> wrote: Deadra, What a rough go of it, I'm so sorry. I have heard that having it subq at home is so much nicer, less side effects. Try to get Chase to tank on liquids prior to his infusion next time. It well help so much if he does. If he can't get it at home, ask the iv nurse to mix fluids with his ivig. Hang in there, and I sure hope this helps Chase as much as it has helped my daughter. ' & a Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: Hello everyone. How was your holidays? Chase had his first IVIG on December 27th. All went well for that one. We returned on the 28th and he was fine for the treatment, then about 2-3 hours later complained of a headache. Dr. had mentioned that some of the side effects of having the wrong dose, or getting too much too soon was cranial pressure, cardiac arrest, and other horrible things. My husband I were so scared that Chase was having a negative reaction, especially when he complained of how bad his head hurt him in the back. We ended up rushing him down to his pediatrician where Chase got sick 3 times. His doctor was watching my son retch into the garbage can to make sure there was no blood in his vomit. ( How degrading.) He told us that since Chase had no reaction at the time of the infusion, that he thought it was a virus. His pedi rheumy told us the same thing when we contacted her about Chase's symptoms before heading down to his pediatrician. Chase proceeded to be sick in the car on the way home (thank god we had the forsight to bring a wastebasket) and then he was sick all night and the following day. He cried from his head hurting so much, he couldn't even lift it to throw up. By Saturday night he was feeling a little better, however he had a huge bloody nose. On Sunday he felt a little better, but still had 3 more nose bleeds. He went back down today for his third dose and there were no after effects, so my husband and I are breathing a huge sigh of relief. He is on 1.5kg/kilo of body weight. He has his next dose Feb. 1st and 2nd. His pedi rheumy called today to see how he was and said that they would try to get the following IVIG's done at home with a home health nurse. We are keeping our fingers crossed that this will work for Chase's arthritis and uveitis. Deadra and Chase 8 pauci and uveitis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 My friend has ivig at home, but it isn't a shot. She wraps a band around her leg that holds 3 prongs in place....no pain at all. she carries the iv around her waist and goes about her business while she is receiving the medicine. Pretty amazing really. Let us know how the next one goes ' & a jia/uveitis Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: They have been giving him 375mg of Tylenol, and also enough Benadryl that it knocks him out for most of the infusion. By subq do you mean like a shot? He developed a psychosis from the methotrexate shots. It was horrible to put him through that. He has never had a problem with the infusions. Even when he had the Remicade, they would put the numbing shot in his vein first, he would clench, but they told him when the bee sting was coming. After that, for the IV's he would let them know which vein he thought was best and watch it being inserted. He has been extremely great for all of his infusions. He did much better this last time with his IVIG that he had yesterday. I am sure once the home health nurse comes, that I may have questions, so thankyou for answering them for me. Take care. Deadra nancy barnes <nancyb315@...> wrote: My daughter was receiving subQ, Vivaglobin, at home, for immune deficiency. She had done the IVIG for about 8 months prior to the subQ, which was SO much easier...less volume (no dilutents added), absorbed more slowly but took less time to infuse because you use multiple sites. After a couple of times with the home health nurse, we were allowed to be on our own (my teen daughter loved that!) - I would prep everything and she would put her needles in her abdomen...tiny...if you want more info, just ask...seemed to have less side effects...also, different brands can affect each child differently, as well as how well hydrated, rate of infusion, etc. Did they give him Benadryl beforehand? Or Advil? They used to give these until they determined she did not need the Benadryl... Any questions, don't hesitate to ask...I hope his next infusion goes smoothly. , 16, immune deficiency, unspecified arthritis, chronic daily migraine ' Taunton <lcdanceacademy@...> wrote: Deadra, What a rough go of it, I'm so sorry. I have heard that having it subq at home is so much nicer, less side effects. Try to get Chase to tank on liquids prior to his infusion next time. It well help so much if he does. If he can't get it at home, ask the iv nurse to mix fluids with his ivig. Hang in there, and I sure hope this helps Chase as much as it has helped my daughter. ' & a Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: Hello everyone. How was your holidays? Chase had his first IVIG on December 27th. All went well for that one. We returned on the 28th and he was fine for the treatment, then about 2-3 hours later complained of a headache. Dr. had mentioned that some of the side effects of having the wrong dose, or getting too much too soon was cranial pressure, cardiac arrest, and other horrible things. My husband I were so scared that Chase was having a negative reaction, especially when he complained of how bad his head hurt him in the back. We ended up rushing him down to his pediatrician where Chase got sick 3 times. His doctor was watching my son retch into the garbage can to make sure there was no blood in his vomit. ( How degrading.) He told us that since Chase had no reaction at the time of the infusion, that he thought it was a virus. His pedi rheumy told us the same thing when we contacted her about Chase's symptoms before heading down to his pediatrician. Chase proceeded to be sick in the car on the way home (thank god we had the forsight to bring a wastebasket) and then he was sick all night and the following day. He cried from his head hurting so much, he couldn't even lift it to throw up. By Saturday night he was feeling a little better, however he had a huge bloody nose. On Sunday he felt a little better, but still had 3 more nose bleeds. He went back down today for his third dose and there were no after effects, so my husband and I are breathing a huge sigh of relief. He is on 1.5kg/kilo of body weight. He has his next dose Feb. 1st and 2nd. His pedi rheumy called today to see how he was and said that they would try to get the following IVIG's done at home with a home health nurse. We are keeping our fingers crossed that this will work for Chase's arthritis and uveitis. Deadra and Chase 8 pauci and uveitis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Deadra, sorry...subQ means subcutaneous - under the skin...don't know if subQ works for the higer doses...my daughter received 30g weekly which took about 2 hrs subQ, with three sites. It left bumps where the fluid was retained under the skin that would disperse over about 48 hrs. I hope things continue to go better for Chase... Thinking of you both, Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: They have been giving him 375mg of Tylenol, and also enough Benadryl that it knocks him out for most of the infusion. By subq do you mean like a shot? He developed a psychosis from the methotrexate shots. It was horrible to put him through that. He has never had a problem with the infusions. Even when he had the Remicade, they would put the numbing shot in his vein first, he would clench, but they told him when the bee sting was coming. After that, for the IV's he would let them know which vein he thought was best and watch it being inserted. He has been extremely great for all of his infusions. He did much better this last time with his IVIG that he had yesterday. I am sure once the home health nurse comes, that I may have questions, so thankyou for answering them for me. Take care. Deadra nancy barnes <nancyb315@...> wrote: My daughter was receiving subQ, Vivaglobin, at home, for immune deficiency. She had done the IVIG for about 8 months prior to the subQ, which was SO much easier...less volume (no dilutents added), absorbed more slowly but took less time to infuse because you use multiple sites. After a couple of times with the home health nurse, we were allowed to be on our own (my teen daughter loved that!) - I would prep everything and she would put her needles in her abdomen...tiny...if you want more info, just ask...seemed to have less side effects...also, different brands can affect each child differently, as well as how well hydrated, rate of infusion, etc. Did they give him Benadryl beforehand? Or Advil? They used to give these until they determined she did not need the Benadryl... Any questions, don't hesitate to ask...I hope his next infusion goes smoothly. , 16, immune deficiency, unspecified arthritis, chronic daily migraine ' Taunton <lcdanceacademy@...> wrote: Deadra, What a rough go of it, I'm so sorry. I have heard that having it subq at home is so much nicer, less side effects. Try to get Chase to tank on liquids prior to his infusion next time. It well help so much if he does. If he can't get it at home, ask the iv nurse to mix fluids with his ivig. Hang in there, and I sure hope this helps Chase as much as it has helped my daughter. ' & a Deadra Dunbar <fortheloveofmyson1998_5@...> wrote: Hello everyone. How was your holidays? Chase had his first IVIG on December 27th. All went well for that one. We returned on the 28th and he was fine for the treatment, then about 2-3 hours later complained of a headache. Dr. had mentioned that some of the side effects of having the wrong dose, or getting too much too soon was cranial pressure, cardiac arrest, and other horrible things. My husband I were so scared that Chase was having a negative reaction, especially when he complained of how bad his head hurt him in the back. We ended up rushing him down to his pediatrician where Chase got sick 3 times. His doctor was watching my son retch into the garbage can to make sure there was no blood in his vomit. ( How degrading.) He told us that since Chase had no reaction at the time of the infusion, that he thought it was a virus. His pedi rheumy told us the same thing when we contacted her about Chase's symptoms before heading down to his pediatrician. Chase proceeded to be sick in the car on the way home (thank god we had the forsight to bring a wastebasket) and then he was sick all night and the following day. He cried from his head hurting so much, he couldn't even lift it to throw up. By Saturday night he was feeling a little better, however he had a huge bloody nose. On Sunday he felt a little better, but still had 3 more nose bleeds. He went back down today for his third dose and there were no after effects, so my husband and I are breathing a huge sigh of relief. He is on 1.5kg/kilo of body weight. He has his next dose Feb. 1st and 2nd. His pedi rheumy called today to see how he was and said that they would try to get the following IVIG's done at home with a home health nurse. We are keeping our fingers crossed that this will work for Chase's arthritis and uveitis. Deadra and Chase 8 pauci and uveitis __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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