side effects from IVIG - Immune Disorders Message Board

matt's mom · 09-12-2006, 09:36 AM

HI Everyone-

My son received his first infusion on Friday and became extremely ill on Saturday with a severe headache- pulling at his hair and vomiting. Has anyone had this reaction and if so what did the docotor do to alleviate the problem?

Thanks- Matt's mom

HeatherM77 · 09-12-2006, 01:15 PM

My daughter recieved an IVIG treatment for Kawaski disease On May 2nd of this year.She reacted awful.She started running a fever throwing up lathargic.They did a spinal tap on her and it came back aseptic menegitis that they think was from the IVIG.She remained in the hosp for 4 more days after that.If he doesn't improve you should talk to your doctor about running some tests if they haven't already.What is he having IVIG treatments for?Take care and I hope things get better Heather

matt's mom · 09-13-2006, 06:19 AM

HI Heather-
Matt was diagnosed in August with selective antibody immune deficiency-basically- cvid. I spoke to the IV nurse last night and she told me the doctor wants to do the IVIG again on the 27th with no pre medication again. He became dehydrated and had terrible headaches and vomiting. I could not even sleep thinking that he has to go through this again.

He is starting to display some anxiety already- not wanting to go to school or be away from me. How did you know to bring your daughter in for the testing?

Thanks- Bonny

HeatherM77 · 09-13-2006, 03:51 PM

Kawaski disease is when the immune system attacks itself instead of the virus.It can cause anurism in the heart.It took 9 days before they knew that she had this.I took her to urgent care because she had a rash and fever.I was told it was just a virus,she wasn't getting any better,wasn't eatting so I took her to the ER told again just a virus,took her to her doc told again it was just a virus,was sent to a dermotolgist who said the same thing.They next morning her fever was 104,her lips were dried and cracked her tongue was bright red and her hands and feet were swollen so we went to childrens ER and they ran some tests and then admitted her it still took 2 days before they sure what she had.It is very rare the hosp we were at only sees about 12 cases a year.The IVIG cut her chances of having anurism and so far all of her echos and all of her ekg have eebn good she has to follow up with Cardio until next May.
I understand your soon being nervous,I know how my daughter reacted to it she felt awful.I hope that his next treatment goes better.I don't know if they mention it to you or not but once you've had IVIG if they run tests for other viruses you can get false pos results for up to 8 weeks.Did they take blood from him to store so if they needed to run any addition tests they would have it?How long will he have to have the IVIG treatments? Good luck hang in there Heather

matt's mom · 09-14-2006, 10:01 AM

Hi Heather-
Wow that is some story about your daughter. Thank goodness you were smart enough to know something was really wrong. Noone ever explained to us that the ivig will effect his test results. I guess we will have to see now that it is too late to reserve any blood.

They are saying that he will need the infusion therapy for two years- every three weeks!! I am glad that your daughter is doing better but I am sure you have the constant worry that I have- it never really leaves.

Thanks for your support- Bonny