Hello,

My 10 year old daughter has been diagnosed with CVID. This year she had two pnuemonias and took a long time recovering. For the last six months she has been very healthy.n She played soccer out in the cold and rain and has not had so much as a sniffle.

Her CBC was normal, antibody response was normal, as were the rest of her blood tests.
However, her IgG levels were low-
IgG= 230 IgM=16 IgA=16

Prior to this year she has always been healthy with perfect attendance records at school. We are ready to start IVIG soon-we are worried that the IVIG will make her sick-and how do we explain this treatment to her when she eats like a horse and is normal in ht. and wt. ect..

If anyone has an experience with a child like this please tell us. We know the IVIG is probably best for her but it is a hard decision to make when she is so healthy.

Thank you.

Hello,

I have an 8 year old daughter who gets a lot of sinus infections. They tested her IgG level and found it was mildly low about 600. Many doctors, including an immunologist at Childrens Hospital told us, she was not low enough for IViG and to use antibiotics once a day to ward off infection. She too is growing, thriving and otherwise healthy and really never misses school.

In October the constant use of anitibiotics started to irritate her stomach and our ENT referred us to another doctor. This new doctor told us about Baygam, its gamma globulin injections in the form of a shot, once a month in her leg. Its done in the doctors office. Therefore is much less invasive and traumatic. He swears by it and seen it work in his patients as did his father before him. We started this treatment in October, taking her off the daily anitibiotics.

Since your daughter is otherwise healthy, you may want to ask if this is an option for you. We had never been told of this option until finding this new doctor.

Hope this helps.

Jana

I am the mother to four fabulous boys who recieve IVIG treatments every month. W faught with chronic sinus, ear and respritory infections for years and finally found a doc who listened to us. While the infusions are frightening the first few times, we have been getting them for 11 years with resounding results. My best advice is to trust your instincts and find a DR that you trust. There are many options available to your family. CVID is now a normal part of our family life and my boys actually look forward to a day of being spoiled and eating all the pudding and icecream they can stomach on their 'Medicine Days'.

Dont give up the fight to maintain your daughters health!!

debbie

Hi,
I have a 4 year old daughter with PID.
Her values were (before the first IVIG treatment);
IgG : 242
IgM : 73
IgA : 42
She also was hospitalised twice for pneumonia and took her first IVIG treatment 2 weeks ago , without any side effects.
She is going to have the second one on the 9th Dec.
She is a cheerful little girl and goes to school everyday with her twin brother.
Feel free to ask anything.
Regards
Murat Gulersen
Istanbul/Turkey