IVIG
Shelbie had her IVIG infusion on Thursday. I am so happy to report it was by far the best infusion to date!! I never thought I would see that. We finally had a nurse that actually took into account my opinion and listened.
I overheard the hospital pharmacist tell the nurse not to worry about titering the dose because she has had it so much. He suggested she run it through in one hour. That is lightening speed!!
When the nurse came in, I told her I didn't agree with the pharmacist and really wanted it to be run slow. We had scheduled out the entire day and it's not like they had anywhere else to be for 12 hours so we ran it over 6.5 hours. The nurse also suggested a different pre med schedule and so we went with that as well.
For the first time ever, Shelbie didn't have any bad reactions during the infusion. She never ran a fever like in the past and the nausea never really caused her any discomfort. Tonight even, the side effects are not nearly as bad as they usually are. She has the headache, fatigue and some nausea and achiness but it's not at all like last month, or the month before that!
Did we find the magic formula? Maybe, maybe not. The thing about IVIG, is that no two bottles of the stuff are the same. One dose of IVIG is made up of thousands of plasma donors and their individual immunity so the reaction each time can be unpredictable depending on how Shelbie's body receives all the immunity. Next month may be a totally different story again but for now...we are making a big deal about this somewhat easier infusion.
I hope the ease of it doesn't mean it won't be as effective? Time will tell.
PS...scroll down to read more about our GI trip to Boise.
I overheard the hospital pharmacist tell the nurse not to worry about titering the dose because she has had it so much. He suggested she run it through in one hour. That is lightening speed!!
When the nurse came in, I told her I didn't agree with the pharmacist and really wanted it to be run slow. We had scheduled out the entire day and it's not like they had anywhere else to be for 12 hours so we ran it over 6.5 hours. The nurse also suggested a different pre med schedule and so we went with that as well.
For the first time ever, Shelbie didn't have any bad reactions during the infusion. She never ran a fever like in the past and the nausea never really caused her any discomfort. Tonight even, the side effects are not nearly as bad as they usually are. She has the headache, fatigue and some nausea and achiness but it's not at all like last month, or the month before that!
Did we find the magic formula? Maybe, maybe not. The thing about IVIG, is that no two bottles of the stuff are the same. One dose of IVIG is made up of thousands of plasma donors and their individual immunity so the reaction each time can be unpredictable depending on how Shelbie's body receives all the immunity. Next month may be a totally different story again but for now...we are making a big deal about this somewhat easier infusion.
I hope the ease of it doesn't mean it won't be as effective? Time will tell.
PS...scroll down to read more about our GI trip to Boise.
I'm glad to hear things went well. That's awesome!
ReplyDeleteCame across your blog, Is she getting the same brand each time as well? This is also very important as people react differently to different brands. You may want to look up the PI (prescribing info) on the web and print it out to prevent someone from running it too fast - being armed with that might be very helpful - that pharmacist mat need to be educated on the dangers of running it so fast - my suggestion? Tell the prescribing doc or call the manufacturer who can send someone to talk to him/her.
ReplyDeleteDoes your daughter have Igi? It's free and for kids on IVIG. You can get it at www.immunedisease.com
Anonymous- thank you for the information. Shelbie doesn't get Igi? I will follow up with the link you included, thanks very much. What is your name by the way?
ReplyDelete