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Name: jennifer
[ Original Post ]
My fourth child Madyson was born 5 weeks healthy but contracted pneumecoccal menningittis in the hospital at two days old. We are very lucky to have Mady home with us now but live in fear that any virus or bacteria could send her back to the hospital. The infectious disease doctor first suggested the absence of a spleen but by ultrasound she definitely has a spleen. Immune deficiency testing can be done when she is 16-18 mos. old (she is 8 mos. now) but the doctors have no good explanation for how and why mady contracted this and then ran with it like she did ( blood became sepsis, many seizures and blood transfusions,antibiotics took a week longer atrophy in her brain so many terms I still dont know what they mean) But I think it all means nobody knows why she got so sick. My dilemma now being with knowing what I do know I feel like I need to follow the neonatologists advice and keep her home and in sanitized conditions but people like family who want us out at events or pastors who want us at church or whatever the reason may be that someone wants me to go with Mady. she is recovering so well and looks so good they say shell be fine. But I cant help to remember how quickly she got sick and how we almost lost her. Do you think I'm being overprotective and compulsive or is there somewhere in the middle that my family and pastor could meet us .Otherwise Im happy being home everyday doing therapy with her because Itruly think her brain is healing. has anyone been through something similiar and then how would she live the rest of her life if she were immune deficient?
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Name: atomic snowflake | Date: Aug 1st, 2006 2:14 PM
Play it safe and keep her at home until you find out how much her immune system is functioning.
New babies sometimes develop life-threatening infections because their immune system is so new.
You need to ask the doctors more questions. You shouldn't be living in so much fear. 

Name: question | Date: Aug 3rd, 2006 11:53 PM
obviously atomic snow flake doesn't have a disabled child.I have a child that is almost 12 months and has to be carefully gaurded against ALL sicknesses ,even a simple cold or stomach flu can put her directly in the hospital on the first day of being ill.If you want to chat email me at [email protected] 

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