I will 1st apologize in advance for how long I know this will be. <img src="i/expressions/face-icon-small-blush.gif" border="0"> I need to get this all out to people that I know will understand and this is my first opportunity to do so...
I am still just starting to come out of the early stages of shock, I think, after being told that my daughter has cf. At the time I was told, I knew nothing about it other than to associate it with severe lung infections, which to my prior knowledge she never had. I never knew about the other manifestations of the disease, & for 4 long years NO ONE ever brought it up as even a remote possibility. <img src="i/expressions/face-icon-small-mad.gif" border="0">
Every time she got sick- especially a sinus or ear infection or bronchitis she loses so much weight (10-15% of body wt), which takes months to come back, by which time she's gotten sick again, and the process repeats. So the end result is that she's gone from age 3 to age 7.5 with almost no net gain, and from upper %'s down to 5% over the yrs. (At this point, at age 7.5, she is on a consistent basis about 42.5lbs and 46.5" tall.) I would tell the ped about this particular pattern of weight loss- and nothing. He first displayed sexist attitude of girls being thinner is just fine <img src="i/expressions/face-icon-small-shocked.gif" border="0"> and then blamed it on meds she was taking (she is medically complex already, with a hx of epilepsy, migraine & dev. disabilities), and yet despite eating all the time, she got thinner and thinner.
As time passed and the problems became more dramatic, my frustration was just reaching such huge proportions and no one was listening!! <img src="i/expressions/face-icon-small-mad.gif" border="0"> I have the feeling others here can relate...
Finally I got a different dr in the practice to see her who was horrified to see her chart and that long flat line on it and got a GI and an endo to see her, who referred her for a sweat test just in the interest of being 'thorough.' Her result was 108, and a repeat test was 90.
So now we start our journey with cf. It's utterly overwhelming, a huge learning curve. We went through this 5yrs ago when the neuro and developmental issues started with her and having a new health condition to start with is scary and exhausting to even think about. Feeling so behind in the game when it comes to nutritional status is scary to me. She will get labs to determine what deficiencies she might have 2wks at our next clinic visit. We were told all those episodes of wt loss with respiratory infections were signs of severe cf flareups that needed much more treatment than what she was getting... I feel so bad now that I had no idea!
Learning chest pt and all that feels like so much. Bringing home the nebulizer and the acapella and trying to teach my dh about how to use it all, showing my parents, trying not to break down, it was just so hard.
Fortunately we have an excellent cf accredited center in our state (one that even trained 14 other hospitals to become accredited!) so I feel she is in excellent hands. Her chest x-ray was good. She did not do good enough on the pulm. function tests to get good results but we hope she does better next time. She has lots of practice now working with her acapella so that should help. Her culture shows she is colonized with one of the varieties of staph. Is all of this typical/common/to be expected?
And then testing the boys. <img src="i/expressions/praying.gif" border="0"> My 9yr old is a noodle but has grown on the same curve yr after yr, is hardly ever sick, & rarely gets 'secondary' infections when he does. His result was 34 on the sweat test. My 11yr old was more worrisome at 48, and has chronic, severe sinus congestion the last couple yrs that I have always chalked up to allergies and not quite pristine dusting, etc. He also has <img src="i/expressions/face-icon-small-blush.gif" border="0"> (NOT used to talking about this yet, lol...though I was informed this will become daily conversation by clinic staff!) THE worst smelling, toilet clogging poop you can imagine. It's been a joke in the house... I truly hope it can remain a joke, you know?? They aren't bothering to sweat-test them again but are doing the gene test on all three. We need to know Shawn's status one way or the other... and to see if Tim is a carrier, so we are going through the process of getting insurance approval right now.
I guess just support and knowing others out there can relate is what I need right now... and hearing from others who can relate to the growth and nutrition issues as well.
I am still just starting to come out of the early stages of shock, I think, after being told that my daughter has cf. At the time I was told, I knew nothing about it other than to associate it with severe lung infections, which to my prior knowledge she never had. I never knew about the other manifestations of the disease, & for 4 long years NO ONE ever brought it up as even a remote possibility. <img src="i/expressions/face-icon-small-mad.gif" border="0">
Every time she got sick- especially a sinus or ear infection or bronchitis she loses so much weight (10-15% of body wt), which takes months to come back, by which time she's gotten sick again, and the process repeats. So the end result is that she's gone from age 3 to age 7.5 with almost no net gain, and from upper %'s down to 5% over the yrs. (At this point, at age 7.5, she is on a consistent basis about 42.5lbs and 46.5" tall.) I would tell the ped about this particular pattern of weight loss- and nothing. He first displayed sexist attitude of girls being thinner is just fine <img src="i/expressions/face-icon-small-shocked.gif" border="0"> and then blamed it on meds she was taking (she is medically complex already, with a hx of epilepsy, migraine & dev. disabilities), and yet despite eating all the time, she got thinner and thinner.
As time passed and the problems became more dramatic, my frustration was just reaching such huge proportions and no one was listening!! <img src="i/expressions/face-icon-small-mad.gif" border="0"> I have the feeling others here can relate...
Finally I got a different dr in the practice to see her who was horrified to see her chart and that long flat line on it and got a GI and an endo to see her, who referred her for a sweat test just in the interest of being 'thorough.' Her result was 108, and a repeat test was 90.
So now we start our journey with cf. It's utterly overwhelming, a huge learning curve. We went through this 5yrs ago when the neuro and developmental issues started with her and having a new health condition to start with is scary and exhausting to even think about. Feeling so behind in the game when it comes to nutritional status is scary to me. She will get labs to determine what deficiencies she might have 2wks at our next clinic visit. We were told all those episodes of wt loss with respiratory infections were signs of severe cf flareups that needed much more treatment than what she was getting... I feel so bad now that I had no idea!
Learning chest pt and all that feels like so much. Bringing home the nebulizer and the acapella and trying to teach my dh about how to use it all, showing my parents, trying not to break down, it was just so hard.
Fortunately we have an excellent cf accredited center in our state (one that even trained 14 other hospitals to become accredited!) so I feel she is in excellent hands. Her chest x-ray was good. She did not do good enough on the pulm. function tests to get good results but we hope she does better next time. She has lots of practice now working with her acapella so that should help. Her culture shows she is colonized with one of the varieties of staph. Is all of this typical/common/to be expected?
And then testing the boys. <img src="i/expressions/praying.gif" border="0"> My 9yr old is a noodle but has grown on the same curve yr after yr, is hardly ever sick, & rarely gets 'secondary' infections when he does. His result was 34 on the sweat test. My 11yr old was more worrisome at 48, and has chronic, severe sinus congestion the last couple yrs that I have always chalked up to allergies and not quite pristine dusting, etc. He also has <img src="i/expressions/face-icon-small-blush.gif" border="0"> (NOT used to talking about this yet, lol...though I was informed this will become daily conversation by clinic staff!) THE worst smelling, toilet clogging poop you can imagine. It's been a joke in the house... I truly hope it can remain a joke, you know?? They aren't bothering to sweat-test them again but are doing the gene test on all three. We need to know Shawn's status one way or the other... and to see if Tim is a carrier, so we are going through the process of getting insurance approval right now.
I guess just support and knowing others out there can relate is what I need right now... and hearing from others who can relate to the growth and nutrition issues as well.