Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 So today, was receiving her infusion and about half way through at her max rate, she went pale and started shaking and got very cold. The only other time this has happened is when she was sick and received the infusion. Today she has a cold and sore throat, but no fever...wondering if others have had trouble with infusions when your child is sick? Is this a common reaction to IVIG? Thanks, Jeane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 what rate were they running it at? Macey has had this reaction before. especially the tremors. Being sick usually didn't matter and sometimes infusing help the illness resolve and symptoms went away by bedtime the night of the ivig. Now while on subq it takes alittle longer to get into the system. Ursula mom to Macey (16, CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 what rate were they running it at? Macey has had this reaction before. especially the tremors. Being sick usually didn't matter and sometimes infusing help the illness resolve and symptoms went away by bedtime the night of the ivig. Now while on subq it takes alittle longer to get into the system. Ursula mom to Macey (16, CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 She has always infused at 300...today they slowed it to 150 after the reaction Sent from my iPhone On Mar 14, 2012, at 1:13 PM, Ursula Holleman <uahollem@...> wrote: > what rate were they running it at? Macey has had this reaction before. > especially the tremors. Being sick usually didn't matter and sometimes > infusing help the illness resolve and symptoms went away by bedtime the > night of the ivig. Now while on subq it takes alittle longer to get into > the system. > > Ursula > mom to Macey (16, CVID) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 yea i think i'd stick to the 150. In 7 years macey never made it over 120. and we still had problems. Go with what works. how many grams is she getting? Ursula On Wed, Mar 14, 2012 at 4:19 PM, Jeane <maryjeanedavis@...>wrote: > ** > > > She has always infused at 300...today they slowed it to 150 after the > reaction > > Sent from my iPhone > > On Mar 14, 2012, at 1:13 PM, Ursula Holleman <uahollem@...> wrote: > > > what rate were they running it at? Macey has had this reaction before. > > especially the tremors. Being sick usually didn't matter and sometimes > > infusing help the illness resolve and symptoms went away by bedtime the > > night of the ivig. Now while on subq it takes alittle longer to get into > > the system. > > > > Ursula > > mom to Macey (16, CVID) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 35 grams every 4 weeks Sent from my iPhone On Mar 14, 2012, at 1:22 PM, Ursula Holleman <uahollem@...> wrote: > yea i think i'd stick to the 150. In 7 years macey never made it over 120. > and we still had problems. Go with what works. how many grams is she > getting? > > Ursula > > On Wed, Mar 14, 2012 at 4:19 PM, Jeane > <maryjeanedavis@...>wrote: > >> ** >> >> >> She has always infused at 300...today they slowed it to 150 after the >> reaction >> >> Sent from my iPhone >> >> On Mar 14, 2012, at 1:13 PM, Ursula Holleman <uahollem@...> wrote: >> >>> what rate were they running it at? Macey has had this reaction before. >>> especially the tremors. Being sick usually didn't matter and sometimes >>> infusing help the illness resolve and symptoms went away by bedtime the >>> night of the ivig. Now while on subq it takes alittle longer to get into >>> the system. >>> >>> Ursula >>> mom to Macey (16, CVID) >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 Hi Jeane, It is interesting being an adult PIDDer with kids with PIDD. You get to have a perspective on what they deal with. Rate of infusion can make such a difference. I infuse normally, IV at 40cc/hr max. I do my infusions at home now, so I have the luxury of running slow. In the infusion centers locally, they push people in and out in 2 hours. Neither my daughters nor I have ever run that fast. I always get the chills a couple of hours into my infusions. Last week, I was in a hurry because I got going to late (I infuse IV every two weeks) and I sped it up to 80cc/hr. I was sick for 3 days with a headache, nausea and exhaustion. My daughters infuse subq. One of them just re-started 3 weeks ago after being off for 18 months. We switched brands. She was fine on the old brand we used....no side effects at all. But now, each of the 3 weeks she has infused, she got chills and a fever an hour into it, began to complain of a lump in her throat, a bad headache and nausea. As a result, tonight we started dosing her twice a week, cutting the weekly dose in half. She just finished her infusion and so far so good. I know that some infusion centers will switch brands without notifying patients. It has happened to us in the past. So it might be worth finding out if they used a different brand. Otherwise, I would ask to slow the infusion rate down and see if that helps. Don't feel pressured to follow their plan of a fast infusion. 300cc/hr is pretty fast. Lastly, making sure we are well hydrated going into infusion day helps a lot. I up my fluid intake 48 hours prior to my IVIG. Terri Mom and daughters, 9 and 11 Combined Immune Def. > > So today, was receiving her infusion and about half way through at her > max rate, she went pale and started shaking and got very cold. The only > other time this has happened is when she was sick and received the > infusion. Today she has a cold and sore throat, but no fever...wondering if > others have had trouble with infusions when your child is sick? Is this a > common reaction to IVIG? > > Thanks, > > Jeane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Ursula and Terri, Thanks so much for your input on this....I will have them slow the infusion down from now on. She has really been off her game today as a result of this. They didn't change brands so I know that is not the case. Terri, it is good to hear your perspective as an " infusee " ....since andra is developmentally delayed she can't always express to me what she is feeling so, its good to have that information. Hoping that tomorrow she will have slept it off and will be feeling better. Thanks, Jeane On Wed, Mar 14, 2012 at 8:31 PM, cerdaclan@... < cerdaclan@...> wrote: > ** > > > Hi Jeane, > > It is interesting being an adult PIDDer with kids with PIDD. You get to > have a perspective on what they deal with. Rate of infusion can make such a > difference. I infuse normally, IV at 40cc/hr max. I do my infusions at home > now, so I have the luxury of running slow. In the infusion centers locally, > they push people in and out in 2 hours. Neither my daughters nor I have > ever run that fast. I always get the chills a couple of hours into my > infusions. Last week, I was in a hurry because I got going to late (I > infuse IV every two weeks) and I sped it up to 80cc/hr. I was sick for 3 > days with a headache, nausea and exhaustion. > > My daughters infuse subq. One of them just re-started 3 weeks ago after > being off for 18 months. We switched brands. She was fine on the old brand > we used....no side effects at all. But now, each of the 3 weeks she has > infused, she got chills and a fever an hour into it, began to complain of a > lump in her throat, a bad headache and nausea. As a result, tonight we > started dosing her twice a week, cutting the weekly dose in half. She just > finished her infusion and so far so good. > > I know that some infusion centers will switch brands without notifying > patients. It has happened to us in the past. So it might be worth finding > out if they used a different brand. Otherwise, I would ask to slow the > infusion rate down and see if that helps. Don't feel pressured to follow > their plan of a fast infusion. 300cc/hr is pretty fast. Lastly, making sure > we are well hydrated going into infusion day helps a lot. I up my fluid > intake 48 hours prior to my IVIG. > > Terri > Mom and daughters, 9 and 11 Combined Immune Def. > > > > > > So today, was receiving her infusion and about half way through at > her > > max rate, she went pale and started shaking and got very cold. The only > > other time this has happened is when she was sick and received the > > infusion. Today she has a cold and sore throat, but no fever...wondering > if > > others have had trouble with infusions when your child is sick? Is this a > > common reaction to IVIG? > > > > Thanks, > > > > Jeane > > > > > > Quote Link to comment Share on other sites More sharing options...
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