I'm so sorry to hear you are going through this with your son, and hope you soon get the answers that you need. No, I don't think you are overreacting. It may not be cf, but it does need to be figured out, because at the very least your child has not been growing well for nearly half a year now, and that is of serious concern and needs to be figured out. Frequent illness and the kind of stools he is having are symptoms that can point to cf, esp combined with growth failure... so again, it should be investigated.
Re the stools: the sink or float is a good thing to try. Seeing slick, glossy lighter-colored stools at times vs. the dark, dull ones is a concerning sign though, in my opinion. That is a common thing to see with greasy stools, indicating undigested fat.
Don't let the slowed growth go with the pediatrician. Once that gets really out of hand, it can be very difficult to resolve. Growth failure was what led to my daughter's dx, but by the time anyone took it seriously, it had gone so much farther than it had to. So regardless of the cause (cf or otherwise) figuring out how to get your son back on his growth curve is vital.
The people who have posted above me are SO right when they tell you that the ped is often very slow to act on the things we see (or just does little things often more to pacify US than anything else) and that the longer it goes, it can turn into one of those wild-goose-chases unless the right people are looking into things.
It is VERY worth it to make the 2hr trip to your closest accredited CF center rather than just seeing the pulmonologist, since that is where all the specialists part of the cf team are in one place- including nutritionist, esp. important in your son's case. For the sweat test, that will most likely happen at the lab affiliated with the center. I'd call the cf center to find out. They can also give you the direct # to the lab. When the ped writes the script for the sweat test, make sure you call the lab to schedule it; it's not a walk-in test like a blood test since they need at least half an hour to do it. Try to get an early slot, since that increases odds of getting results back the same day... the less waiting the better. I know how hard it is.
And since some pediatricians are not as good as they should be about relaying specific results, ask him to specify on the orders for the sweat test to send a copy of the results to parent as well as doctor. That will ensure the lab sends you a copy of the results too, which is good to have. Sometimes the doctors are a little too vague, esp if they aren't taking us as seriously as they should be.
If you call the cf clinic yourself to make an appt for your son, don't just talk to the secretary to book an appt; try to talk to the nurse and describe what's going on with your child in order to increase odds of getting a closer appt slot: if the nurse is concerned about your child that may affect how quickly you can get him in vs. the secretary just sticking him in the schedule at the next convenient slot. You may still get a time rather far out, however- if he winds up with a borderline or positive sweat test result, that clinic visit will almost certainly be bumped up to something much more immediate.
We were one of the families that had the wild goose chase scenario and it took many years to dx my daughter (she wasn't dx'ed until 7.5). I never even considered CF as a possibility until the sweat test was ordered, since while she does have more resp infections than her brothers it wasn't stereotypical 'severe' constant illness and it stunned me to find out that was the culprit- and that such a simple test (sweat test) could have dx'ed her after all the frustration we'd been through over the years.
I wish the best... please let us know how things go. We are here to answer whatever questions you have and help you through this process, however it turns out! <img src="i/expressions/rose.gif" border="0">
Re the stools: the sink or float is a good thing to try. Seeing slick, glossy lighter-colored stools at times vs. the dark, dull ones is a concerning sign though, in my opinion. That is a common thing to see with greasy stools, indicating undigested fat.
Don't let the slowed growth go with the pediatrician. Once that gets really out of hand, it can be very difficult to resolve. Growth failure was what led to my daughter's dx, but by the time anyone took it seriously, it had gone so much farther than it had to. So regardless of the cause (cf or otherwise) figuring out how to get your son back on his growth curve is vital.
The people who have posted above me are SO right when they tell you that the ped is often very slow to act on the things we see (or just does little things often more to pacify US than anything else) and that the longer it goes, it can turn into one of those wild-goose-chases unless the right people are looking into things.
It is VERY worth it to make the 2hr trip to your closest accredited CF center rather than just seeing the pulmonologist, since that is where all the specialists part of the cf team are in one place- including nutritionist, esp. important in your son's case. For the sweat test, that will most likely happen at the lab affiliated with the center. I'd call the cf center to find out. They can also give you the direct # to the lab. When the ped writes the script for the sweat test, make sure you call the lab to schedule it; it's not a walk-in test like a blood test since they need at least half an hour to do it. Try to get an early slot, since that increases odds of getting results back the same day... the less waiting the better. I know how hard it is.
And since some pediatricians are not as good as they should be about relaying specific results, ask him to specify on the orders for the sweat test to send a copy of the results to parent as well as doctor. That will ensure the lab sends you a copy of the results too, which is good to have. Sometimes the doctors are a little too vague, esp if they aren't taking us as seriously as they should be.
If you call the cf clinic yourself to make an appt for your son, don't just talk to the secretary to book an appt; try to talk to the nurse and describe what's going on with your child in order to increase odds of getting a closer appt slot: if the nurse is concerned about your child that may affect how quickly you can get him in vs. the secretary just sticking him in the schedule at the next convenient slot. You may still get a time rather far out, however- if he winds up with a borderline or positive sweat test result, that clinic visit will almost certainly be bumped up to something much more immediate.
We were one of the families that had the wild goose chase scenario and it took many years to dx my daughter (she wasn't dx'ed until 7.5). I never even considered CF as a possibility until the sweat test was ordered, since while she does have more resp infections than her brothers it wasn't stereotypical 'severe' constant illness and it stunned me to find out that was the culprit- and that such a simple test (sweat test) could have dx'ed her after all the frustration we'd been through over the years.
I wish the best... please let us know how things go. We are here to answer whatever questions you have and help you through this process, however it turns out! <img src="i/expressions/rose.gif" border="0">