I was hoping someone could shed some light on my childrens situation. I have 3 chikdren on I.V.I.G Elijah 9 (10 months now) Makayla 6( 7 months) and Addison 5 (4 years). My youngest used to have alot of side affects, headaches,vomiting, seizers. As long as we use Gammaguard she is fine. She gets 12 grams every 3 weeks. Elijah gets 30 grams ever 3 weeks and Makayla 12g every 3 weeks. Just the past 3 infusions all 3 of them have started getting headaches and fevers. They are all pre medicated with benedryl 25mg and acetaminophen. I also started giving them motrin and acetaminophen up to 72 hours post infusion. I know there are many reason for side effects. I was told my kids have more side effects because they are often ill before the infusion. Is there any one out there doing anything I am not to help with side effects? I m just trying to make this whole situation a little easier on my kids. Thank you in advance.........Melissa

I have a question my 9 year old son was just diagnosed I think you answered one of my questions(not sure though) should I have my daughters levels checked she is not really sick all the time except since she started preschool. Is there a genetic tendency?



allie

Yes have her tested. My whole fammily went thru genetic testing and thats how I found out 2 of my other kids have CVID.

Thanks I will definitely talk to the doc. Is there a certain age for diagnosis? I hope someone responds and gives you some pointers regarding your children. I really don't know how you do it with three I am going nuts with just one right now. Your family will definitely be in our prayers. Again thank you.



allie

I started IVIG last month. My doctor didnt really go over any of the possible side effects with me. Most of my information about IVIG I got from this forum and other websites about IVIG. I use phlebogamma 40g infused over 3 1/2 to 4hrs. The first infusion I got a wicked back ache a few hours later and the next day I was sick to my stomach and very tired. I got my second infusion a few days ago. I felt great afterwords. Two days later I did have a pretty stiff neck, and about 3 days later the most curious thing happend... I had 2 sebacous cysts pop up. I suppose it could just be a coincidence, but it sure was strange. All in all any side effects Ive experienced have been temporary and worth while in comparison to how alive my body feels afterwords.