Hi Vicki,
I tried to post Monday, but I pressed the wrong button and 'poof'. So, here I am again. I am glad we are getting a chance to share information. Let me know if I overwelm you - Our situation may be unique and your son's condition may not be as severe.
Our daughter has low platelets too. She has taken IVIG for two years. Our doctor has given her the IVIG when she has been exposed to the Chicken Pox (she has had the vaccine, but her counts are low enough that she is considered immunocompromised) and to see if this could help her as a maintenance medication (infusion every 6 months). The first couple of times we thought it worked, but it was more of a coincedance. Right now she is taking cyclosporine (an anti-rejection medication) she is low, but stable. She had been taking steroids Sept - Nov. She had a slow taper off the prednisone or dexamethasone of 2-3 weeks, but her counts would just drop. So, she has been on the cyclosporine for almost 4 weeks now.
After the fifth year our daughter was considered chronic. She could outgrow this and/or there are other stronger medications we have not tried. Our doctor has a series of plans for us. Her condition is exasperated by winter virus's. Her immune response elevates to fight infection and then attacks her blood cells. She has a swollen liver and spleen (filtering the dead cells) and her bone marrow produces 2-3 times the normal amount of cells to compensate for the cell destruction. She has been tested for: 200+ cancers, 100+ infectious diseases, her GI tract has been scoped several times, and they even biopsied a lymph node. She has always been an old soul and has dealt with everything so well. When she was younger and had signs of stress we spent time with the Child Life Dept. they had techniques to practice role play games. She was the doctor and would explain and comfort the doll/patient. It really ment alot to her and when she thinks about the experience it offers her comfort.
How was your visit on Monday? Any more information and what are his blood counts? I hope all is well. Do you have the 'pediatric normal value's' for blood counts? If you don't I will post them.
Warmest Regards,
Lari
Here our her latest counts...
Hematocrit --> 27
Platelets -->227
WBC --> 3
ANC --> 1200
