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Hi! We are new to the site and are here with alot of questions!

I have a 4 year old daughter (Reagon) who was diagnosised with an

immune deficiency (CVID) at 6 months old. She has received IVIG

since then. For about a year now she has had horrible reactions

starting 48 hours after the infusion. She has really bad migraine

headaches that are so bad she holds the back of her head and and

cries every time she moves it. She vomits for 24 hours straight and

her whole body shakes. She get very disoriented and her speech gets

slurred. The whole thing scares me to death. We had weened her

IVIG's to every 3 months because of the reactions and she had been

doing great. She only had and IVIG in Oct. and Feb. with only one

ear infection in Feb. before infusion. But by June her levels were

down to 75 and she got bronchitis so the doctor wants to go back to

once a month again! I'm so disappointed since she (in my mind) was

doing so well even when getting them every 3 months. She has only

received 3 IVIG's in 9 months and had only had 1 ear infection &

bronchitis! Her WBC count was fine as was the rest of her blood

work and the catscan of her lungs showed no damage was occuring.

Her food allergies were the same, digestive was great and no asthma.

I had asked her dr. about keeping the IVIG's at 3 months but putting

her on a daily antibiotic, but he wouldn't do it. We have tried

EVERY thing to prevent the reactions, but nothing works. They give

her her infusions over a 10-12 hour time period,give her premeds,

postmeds, Zofran & send her home on an IV of fluids for 3 days, but

nothing works. They have also tried several different products, but

they all have the same effect. I keep praying since this was

something she has had since birth that MAYBE one day her little

immune system will kick in. Anyone know of someone that that's

happened to?

Thanks!

Becki