I know it's nothing new to anyone here but it is soooo frustrating. It took me 2 1/2 years of hell and reading a bunch of medical books to finally diagnosis my first daughter with CF. The pediatrician still told me I was wrong, but I refused to leave the office without an order for a sweat test... and the rest is history, for me at least...
Now, my brother and his wife are having the same problem. Their son has had every problem you can imagine relating to CF... chronic lung problems, repeatedly diagnosised as asthma, bronchitis, etc... loose, greasy bm's, he has a huge pot belly, disportionately bigger than the rest of his body, terrible reflux problems, etc... one sign after another. Not to mention two first cousins (both my daughters) with CF. Still, they cannot get a doctor to write an order for a sweat test. He is two years old and has been sick his whole life. Every other month or so I get a call from my sister-in-law crying and asking me tons of questions about new problems her son is having. (I live 1500 miles away from her). Because they are military, they have moved a lot and have seen several doctors and had several ER visits. The last doctor she took him to told her that she was just being paranoid, that he (the doctor) had a better chance of having CF than her son did, and that she just needs to let it go and forget about it. My brother believes the doctors and tells her to drop it. (the same thing my father told me when I kept saying Kaitlyn was sick)... My family is in chronic denial mode. Several years after Kaitlyn was diagnosed I was telling my dad that I was thinking of applying for a wish from make a wish for Kaitlyn, my dad's response was "I thought that was a program for kids with terminal illnesses"... DUH... Where the heck have you been?????
I'm sorry for venting here... Just feel so frustrated. I called the CF Center today where my brother and his wife live and asked their policies on getting sweat tests. I found out when they do them and stuff so I can call my sister-in-law and give her the info... problem is, I can't do anymore than that. I can't force her or a doctor to actually perform the test. I just want to shake everyone and tell them to stop being so damn selfish and help this poor child out. I know it's hard for a parent to acknowledge that their child has a major health problem, but for goodness sake, how much does he have to suffer before someone does something???????
Any advice on how to get an order for a sweat test when the doctors resist your attempts???? Or how to persuade a family member to DEMAND the test and not take no for an answer???
Thanks for allowing me to vent. Any advice is appreciated.
Now, my brother and his wife are having the same problem. Their son has had every problem you can imagine relating to CF... chronic lung problems, repeatedly diagnosised as asthma, bronchitis, etc... loose, greasy bm's, he has a huge pot belly, disportionately bigger than the rest of his body, terrible reflux problems, etc... one sign after another. Not to mention two first cousins (both my daughters) with CF. Still, they cannot get a doctor to write an order for a sweat test. He is two years old and has been sick his whole life. Every other month or so I get a call from my sister-in-law crying and asking me tons of questions about new problems her son is having. (I live 1500 miles away from her). Because they are military, they have moved a lot and have seen several doctors and had several ER visits. The last doctor she took him to told her that she was just being paranoid, that he (the doctor) had a better chance of having CF than her son did, and that she just needs to let it go and forget about it. My brother believes the doctors and tells her to drop it. (the same thing my father told me when I kept saying Kaitlyn was sick)... My family is in chronic denial mode. Several years after Kaitlyn was diagnosed I was telling my dad that I was thinking of applying for a wish from make a wish for Kaitlyn, my dad's response was "I thought that was a program for kids with terminal illnesses"... DUH... Where the heck have you been?????
I'm sorry for venting here... Just feel so frustrated. I called the CF Center today where my brother and his wife live and asked their policies on getting sweat tests. I found out when they do them and stuff so I can call my sister-in-law and give her the info... problem is, I can't do anymore than that. I can't force her or a doctor to actually perform the test. I just want to shake everyone and tell them to stop being so damn selfish and help this poor child out. I know it's hard for a parent to acknowledge that their child has a major health problem, but for goodness sake, how much does he have to suffer before someone does something???????
Any advice on how to get an order for a sweat test when the doctors resist your attempts???? Or how to persuade a family member to DEMAND the test and not take no for an answer???
Thanks for allowing me to vent. Any advice is appreciated.