Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 If your referring to the kid who is bouncing off the walls post infusion, you must be speaking of Cassie. I always blame it on the dextrose that was used. It was like getting a sugar rush without getting to enjoy it : ) But in all seriousness, Cassie does get a little more active after infusions and it tends to last for a few days. She then is usually back to her old self and then the last week drag comes up. Hope all are doing well. Have a great weekend. Belinda Rose, Mom to Allyssa (10) and Cassie (7), igg immunodeficient, asthma, sinusitis, IVIG for 5 years (trialing off for retesting) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Hi Kim, No, your son is not the only one!!! My was always like that too after an infusion. He was always never much of an eater but when he got an infusion, boy did he eat!!! He said it was because he felt better. So I would have to say that the ivig was giving the body enough of a brake from fighting off things that it gave more of the energy that they would normally have to run around and play. My son also would not want to be out running around with the kids but would just sit and play with his legos and watch tv. Now he plays with the others more willingly, could be too that he is getting older, who knows. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 It would take an anchor to hold down the first week after IVIG. 8-) Wenoka At 06:44 PM 04/05/2002 -0000, you wrote: >I was wondering how other children respond to the IVIG that first >week. usually falls asleep during the end of the infusion, but >he is really hyper for a few days after. Then, about a week before >he is due again, he slows down. Not drastically, but noticable, i.e. >naps in the afternoon when he normally doesn't. The Dr. never heard >of any kids getting hyper after their treatment and we were the >first. He laughed, since doesn't fit a whole lot of anything >book wise. > >Just wondering if it maybe has nothing to do with the IVIG or if >others do experience this " BOOST " of energy after treatment. > >Kim - Mom to Nick, (CVID) and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 Kim: My son Blake is 10 yrs. old and he receives IVIG every 2 weekw. We travel 2 hrs. one way for him to receive this. He is on 10 grams. Each time he receives it, they always premedicate him with Solumedrol (steroids) and Benadryl. We actually have stock in the company that manufactures Benadryl(Pfizer). When we get through, I swear Blake is a different child. He will drive you crazy. And let me tell you one thing, he also eats like a pig after the steroids kick in. He could care less for food at any other time of the week, but give him Solumedrol, and boy, he wants things you could never get him to eat at any other time. And he " bounces every where(my Tigger). We also deal with the behavior problems that come with Solumedrol. Because Blake has the Sensory Intergration problems and ADHD(a gift from his prematurity) the meds. inhance the " undesired " behavior as well as the hyperactivity. But by the Tues. before he gets his bi- weekly infusion, you can tell he is in no mood to dispute his parents. What I mean by this is, you would nt think he was the same child the week before. He becomes sooooo listless and very tired. This is also the time he starts really having problems with his breathing. His Teacher that comes to our house can tell the difference also in his school work. He will start yawning and become so sleepy that when she leaves he goes to bed!! And she is only here for 1 hr.!!!! Then Fri. comes and here comes the " Happy Juice " as Blake calls it. He is sooooooooo ready to get the stuff that he will now sit and let teh nurses get his IV in with out fighting. And for Blake to not fight them, they are shocked(I think part of it is age too!). Well gotta go. It's time to try and get the " rug-rat " to eat. Hope all the other children are doing fine(as can be expected with Spring hitting full bloom). I will update at a later time on the " Adventures of Blake " as soon as I get a chance. (mom to Blake CVID with Selective T-Cell Dysfunction,Asperger's Syndrome,Severe Asthma Sensory Intergrated Motor Issues and a rare Blood disorder-Prothrombin Genetic Defect WHEW!!!!!!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 Lucas also follows the same pattern. He says it is because he feels better because his GAMMA ARMIES are fighting for him. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 I feel better that I am not alone regarding the " Boost " of energy my son gets right after his treatment. When the Dr. said I was the first he ever heard I was so shocked. If you think about it, it just makes sense that they would get a little hyper after having the treatment - their bodies are lacking what they need and then to have it all replenished all at once. Especially if they are not feeling well before. And my Dr. is a pediatric immunologist at children's hospital, so it's not like he doesn't see a lot of kids. Chris' teacher can tell when he has his treatment. She says he is distracted, impulsive and can't sit still. I remember a visit to Wal-Mart right after one of our first treatments...he literally cart wheeled down the isles. He couldn't contain his energy! It's kind of funny now, I was mortified at the time. Anyway, I would rather have him hyper and well - then contained and sick. I'm sure we would all agree. Also, when I told the Dr. that he slows down that last week, taking more naps, etc..., he said the treatment might not be lasting the entire four weeks (we've only been doing this since July). He is running his blood work at it's peak and again right before the next treatment to see. He gave me the option to go to every three weeks if I thought it was a problem or to up his dose a little. I opted for the increased dose for now. I would rather not go to every three weeks unless it's really necessary. He's not getting any breakthrough infections, just gets a little tired and achy that last week. Not enough to impact his activities, just enough that I notice it. I know a lot of you get your treatments every 3 weeks ( and sometimes less). Is it because of breakthrough infections or just the protocol of different doctors. I am curious. Thanks all for responding... Kim - Mom to Nick 7, 5 (CVID) and 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Rebekah is rather hyper for about 3 days afterwards. After the very first infusion, she ran around the house for a solid hour. We did think she even knew HOW to run. Pam wife to (15 years) mother to , 8, Hannah, 5, Rebekah 2, and Leah (5-11-2001) IVIG Side effects I was wondering how other children respond to the IVIG that first week. usually falls asleep during the end of the infusion, but he is really hyper for a few days after Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 A new article was published about IVIG side effects: Arch. Dis. Child. 2006;91;651-654; D Singh-Grewal, A Kemp and M Wong. I can't attach the article so I'll post some of the main findings for those that are interested: Title: Immunoglobin Infusions Adverse Events Following Intravenous: A Prospective Study of the Immediate and Delayed http://adc.bmjjournals.com/cgi/content/full/91/8/651 AIM: To document the incident of immediate and delayed adverse events (AEs) following IVIG in children METHODS: AEs were recorded for 345 infusions among 58 children with immune deficiency. Parents were asked ¡¡Did you notice any problems after the immunoglobulin infusion?¢¢, followed by a list of common adverse effects (fever, headache, rash, abdominal pain, tiredness, nausea, vomiting) RESULTS: Immediate AEs occurred in 10% and delayed adverse event in 41% of children. Sixty nine (72.6%) of the delayed reactions occurred within 24 hours of IVIG. A significant number of delayed reactions occurred > 24 hours post IVIG: 10 between 24-48 hours, 6 between 48-72 hours, 10 between 72-96 hours. CONCLUSIONS: Delayed adverse events to IVIG are common; they occure more frequently than immediate AEs and are the cause of significant morbidity. Recognition of delayed AEs is important in the care of children receiving IVIG therapy. DISCUSSION: To our knowledge this is the first study to document the high rate of delayed AEs (20.9% of infusions and 41.4% of patients). Delayed AE were six times more frequent than immediate reactions per patient and four times more frequent per infusion. The previous lack of recognition of the significance of delayed AE indicates that unless these delayed symptoms are actively sought they are likely to be overlooked. In conclusion, delayed AEs to IVIG are common in children and occur more frequently than immediate AEs. They were the principal cause of lost school time, need for additional therapies, and medical consultations in this study. Recognition of the high frequency of delayed AEs is important in the care of children receiving IVIG therapy. ___________________ mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 this is very upsetting to me ---- Schulman <dietdoc@...> wrote: > A new article was published about IVIG side effects: Arch. Dis. Child. 2006;91;651-654; D Singh-Grewal, A Kemp and M Wong. I can't attach the article so I'll post some of the main findings for those that are interested: > > Title: Immunoglobin Infusions Adverse Events Following Intravenous: A Prospective Study of the Immediate and Delayed > http://adc.bmjjournals.com/cgi/content/full/91/8/651 > > AIM: To document the incident of immediate and delayed adverse events (AEs) following IVIG in children > > METHODS: AEs were recorded for 345 infusions among 58 children with immune deficiency. Parents were asked ¡¡Did you notice any problems after the immunoglobulin infusion?¢¢, followed by a list of common adverse effects (fever, headache, rash, abdominal pain, tiredness, nausea, vomiting) > > RESULTS: Immediate AEs occurred in 10% and delayed adverse event in 41% of children. Sixty nine (72.6%) of the delayed reactions occurred within 24 hours of IVIG. > > A significant number of delayed reactions occurred > 24 hours post IVIG: > 10 between 24-48 hours, > 6 between 48-72 hours, > 10 between 72-96 hours. > CONCLUSIONS: Delayed adverse events to IVIG are common; they occure more frequently than immediate AEs and are the cause of significant morbidity. Recognition of delayed AEs is important in the care of children receiving IVIG therapy. > > DISCUSSION: To our knowledge this is the first study to document the high rate of delayed AEs (20.9% of infusions and 41.4% of patients). Delayed AE were six times more frequent than immediate reactions per patient and four times more frequent per infusion. The previous lack of recognition of the significance of delayed AE indicates that unless these delayed symptoms are actively sought they are likely to be overlooked. > > In conclusion, delayed AEs to IVIG are common in children and occur more frequently than immediate AEs. They were the principal cause of lost school time, need for additional therapies, and medical consultations in this study. Recognition of the high frequency of delayed AEs is important in the care of children receiving IVIG therapy. > ___________________ > > > mom to CVIDer > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Thanks Carol. I had heard a self injected version was available, but didn't know the name. Appreciate the link. Ann AlbuquerqueSee AOL's top rated recipes and easy ways to stay in shape for winter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 Hi again-Re:IVIG there is a new sub-Q injection called Vivaglobulin which lets a patient have free range of movement while being injected/can also be self injected. http://www.medscape.com/viewarticle/525000 Carol in Detroit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 I was told by a nurse in the infusion center at UCLA that IVIG has been hard to come by and we, therefore, don't necessarily get the same brand every time which can cause the side effects to vary. They use tylenol and benedryl to help lessen the effects, but won't let you drive for several hours if you take the benedryl. Quote Link to comment Share on other sites More sharing options...
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