My eight year old son, Tyler, as diagnosed with cf last Feb. The pulmonoligist quickly changed that diagnosis to atypical cf. I believe he had a partial bowel obstruction as a baby, his weight started off in the 99th percentile he is now in the 25th, his b.m. has always been a variety of floaty colors, of course he had the salty skin, frequent "colds" and always a runny nose. Fevers come and go with no apparant reason. I would take Tyler to the doctor and I was always always overreacting. This became our norm for 7 years untill I went to school to become a respiratory therapist. The I begged our pediatrician for a sweat chloride. He has had three tests 51,54, and 61. They say he does not have any cf genes. However, his lungs show cf changes and he has the signs and symptoms so he is being treated. The doctors dont seem to understand why the treatments are working and all the tests say he shouldn't need the therapys. It's just aggravating to go to clinic and have the doctors ask me what I think we should do. I am still new at this and think maybe the pulmonologist should be able to tell me what to do. Anyways, sorry for the long post. I just needed to vent, and it sure does help!!
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Mom irritated with clinic
- Thread starter bwoodsyb
- Start date
My eight year old son, Tyler, as diagnosed with cf last Feb. The pulmonoligist quickly changed that diagnosis to atypical cf. I believe he had a partial bowel obstruction as a baby, his weight started off in the 99th percentile he is now in the 25th, his b.m. has always been a variety of floaty colors, of course he had the salty skin, frequent "colds" and always a runny nose. Fevers come and go with no apparant reason. I would take Tyler to the doctor and I was always always overreacting. This became our norm for 7 years untill I went to school to become a respiratory therapist. The I begged our pediatrician for a sweat chloride. He has had three tests 51,54, and 61. They say he does not have any cf genes. However, his lungs show cf changes and he has the signs and symptoms so he is being treated. The doctors dont seem to understand why the treatments are working and all the tests say he shouldn't need the therapys. It's just aggravating to go to clinic and have the doctors ask me what I think we should do. I am still new at this and think maybe the pulmonologist should be able to tell me what to do. Anyways, sorry for the long post. I just needed to vent, and it sure does help!!
My eight year old son, Tyler, as diagnosed with cf last Feb. The pulmonoligist quickly changed that diagnosis to atypical cf. I believe he had a partial bowel obstruction as a baby, his weight started off in the 99th percentile he is now in the 25th, his b.m. has always been a variety of floaty colors, of course he had the salty skin, frequent "colds" and always a runny nose. Fevers come and go with no apparant reason. I would take Tyler to the doctor and I was always always overreacting. This became our norm for 7 years untill I went to school to become a respiratory therapist. The I begged our pediatrician for a sweat chloride. He has had three tests 51,54, and 61. They say he does not have any cf genes. However, his lungs show cf changes and he has the signs and symptoms so he is being treated. The doctors dont seem to understand why the treatments are working and all the tests say he shouldn't need the therapys. It's just aggravating to go to clinic and have the doctors ask me what I think we should do. I am still new at this and think maybe the pulmonologist should be able to tell me what to do. Anyways, sorry for the long post. I just needed to vent, and it sure does help!!
Wow, I had to check again to make sure I didn't write this post! lol! We are in the same boat. All the treatment for CF but no known genes. And, the clinic we go to is less than responsive. The nurses are great but the doctor doesn't call when she says she will and just keeps increasing time on Bactrim for Staph which doesn't seem to want to go away.
61 is a positive test...5o's way high borderline. hmmmm.
Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
61 is a positive test...5o's way high borderline. hmmmm.
Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
Wow, I had to check again to make sure I didn't write this post! lol! We are in the same boat. All the treatment for CF but no known genes. And, the clinic we go to is less than responsive. The nurses are great but the doctor doesn't call when she says she will and just keeps increasing time on Bactrim for Staph which doesn't seem to want to go away.
61 is a positive test...5o's way high borderline. hmmmm.
Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
61 is a positive test...5o's way high borderline. hmmmm.
Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
Wow, I had to check again to make sure I didn't write this post! lol! We are in the same boat. All the treatment for CF but no known genes. And, the clinic we go to is less than responsive. The nurses are great but the doctor doesn't call when she says she will and just keeps increasing time on Bactrim for Staph which doesn't seem to want to go away.
<br />61 is a positive test...5o's way high borderline. hmmmm.
<br />Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
<br />I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
<br />61 is a positive test...5o's way high borderline. hmmmm.
<br />Have you had cultures done? I would definitely recommend that, especially if Tyler is currently having lung symptoms.
<br />I recently emailed a prominent clinic to ask about kids like ours. The director there said there are a lot of kids in this boat, borderline sweats, abnormal CT scans, positive cultures, failure to thrive, PI, etc and no known genes. I asked him if there are many research activities in the area and he said there are some. For now, we are happy to finally be getting treatment (even though the clinic drives me NUTS!) and staving off any more damage that could come without such aggressive treatments. But I put a lot of faith that doctors and geneticists will figure it out because being in the grey zone is so much stress already added to the stress of our kids being sick. Feel free to PM me anytime, I have so BTDT. Hope things get better for you soon.
valshingle
New member
Are you both in the US? Are you going to a designated CF center? I was at a seminar (given by two CF centers) this past weekend and they said for accurate sweat test interpretations and CF diagnosis that patients should be going to/evaluated by a CF center.
There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
valshingle
New member
Are you both in the US? Are you going to a designated CF center? I was at a seminar (given by two CF centers) this past weekend and they said for accurate sweat test interpretations and CF diagnosis that patients should be going to/evaluated by a CF center.
There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
valshingle
New member
Are you both in the US? Are you going to a designated CF center? I was at a seminar (given by two CF centers) this past weekend and they said for accurate sweat test interpretations and CF diagnosis that patients should be going to/evaluated by a CF center.
<br />
<br />There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
<br />
<br />There are currently >1600 CF mutations and that amount is growing daily. While I do not wish CF on you, it's possible that your kids have mutations that haven't been found yet. One of my daughter's mutations wasn't discovered until she was 9 years old. Her sweat test and IRT's were abnormal. In fact, they started treatment at 2 weeks of age because of the strong suspicion (before we got a definitive sweat test back).
Valshingle, we are going to a CF clinic. I do wonder about the gene testing and unknown mutations. He had 7T/9T variants and polymorphisms but that was it. I am always shocked about just how many of us there are in this situation. When you said your daughter's mutation wasn't discovered until she was nine, do you know how they discovered it? Did they then go back and look at people to see if they had that mutation or would people have to get re-tested every so often to see if they know about more new ones? Very interesting stuff if you ask me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Valshingle, we are going to a CF clinic. I do wonder about the gene testing and unknown mutations. He had 7T/9T variants and polymorphisms but that was it. I am always shocked about just how many of us there are in this situation. When you said your daughter's mutation wasn't discovered until she was nine, do you know how they discovered it? Did they then go back and look at people to see if they had that mutation or would people have to get re-tested every so often to see if they know about more new ones? Very interesting stuff if you ask me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Valshingle, we are going to a CF clinic. I do wonder about the gene testing and unknown mutations. He had 7T/9T variants and polymorphisms but that was it. I am always shocked about just how many of us there are in this situation. When you said your daughter's mutation wasn't discovered until she was nine, do you know how they discovered it? Did they then go back and look at people to see if they had that mutation or would people have to get re-tested every so often to see if they know about more new ones? Very interesting stuff if you ask me <img src="i/expressions/face-icon-small-smile.gif" border="0">