posoutlook
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My son's father tells him he DOES NOT HAVE CF!
- Thread starter posoutlook
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posoutlook
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posoutlook
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Mommafirst
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Gosh I am so sorry, what a mess. If only men came with a crystal ball so we could know who we were going to be dealing with when we share a child.
I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
I wish I had more to help. (((HUGS)))
I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
I wish I had more to help. (((HUGS)))
M
Mommafirst
Guest
Gosh I am so sorry, what a mess. If only men came with a crystal ball so we could know who we were going to be dealing with when we share a child.
I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
I wish I had more to help. (((HUGS)))
I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
I wish I had more to help. (((HUGS)))
M
Mommafirst
Guest
Gosh I am so sorry, what a mess. If only men came with a crystal ball so we could know who we were going to be dealing with when we share a child.
<br />
<br />I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
<br />
<br />I wish I had more to help. (((HUGS)))
<br />
<br />I don't have much to offer, other than the fact that while your son doesn't have found mutations, he certainly sounds A LOT like most of the kids around here in terms of symptoms. So he may be atypical in diagnostics, but certainly not with symptoms.
<br />
<br />I wish I had more to help. (((HUGS)))
posoutlook
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posoutlook
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posoutlook
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I don't really have any advice either. Even if you son doesn't have any mutations identified yet, he still has some health issues. His health has improved with treatments. Even though he's your son's father, would it be possible to NOT share so much information with him in terms of appointments being that he's being a detriment to your son's health?
When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I don't really have any advice either. Even if you son doesn't have any mutations identified yet, he still has some health issues. His health has improved with treatments. Even though he's your son's father, would it be possible to NOT share so much information with him in terms of appointments being that he's being a detriment to your son's health?
When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I don't really have any advice either. Even if you son doesn't have any mutations identified yet, he still has some health issues. His health has improved with treatments. Even though he's your son's father, would it be possible to NOT share so much information with him in terms of appointments being that he's being a detriment to your son's health?
<br />
<br />When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
<br />
<br />Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />When DS was diagnosed at birth there was some confusion --- normal sweat tests, a couple of inconclusive blood tests and one positive blood test --- so DH and I were in a little bit of denial. However, we continued to do his treatments and figured that "down the line when someone would tell us it was all a mistake, that DS would have the healthiest lungs around". <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, he DOES have CF and when he cultured Pseudomonas at 3 months old it pretty much brought us to that reality.
<br />
<br />Hopefully some other parents will have some suggestions. I seem to recall a parent with a similar issue here a year or so ago -- the dad would go so far as to run the vest without the child in it, just so it appeared they were doing treatments. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I was dx at age 47 (Cf didn't have a name until I was 15). I began showing symptoms at age 17. I was a lifeguard on one of the largest ocean beaches in Massachusetts for 5 years. I played varsity basketball in college. I recently repeted the geno testing, first done in 1960, to identify the "second" gene. The report came back suggesting that my combination was consistant with "late onset".
I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
Good luck,
Bill
I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
Good luck,
Bill
I was dx at age 47 (Cf didn't have a name until I was 15). I began showing symptoms at age 17. I was a lifeguard on one of the largest ocean beaches in Massachusetts for 5 years. I played varsity basketball in college. I recently repeted the geno testing, first done in 1960, to identify the "second" gene. The report came back suggesting that my combination was consistant with "late onset".
I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
Good luck,
Bill
I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
Good luck,
Bill
I was dx at age 47 (Cf didn't have a name until I was 15). I began showing symptoms at age 17. I was a lifeguard on one of the largest ocean beaches in Massachusetts for 5 years. I played varsity basketball in college. I recently repeted the geno testing, first done in 1960, to identify the "second" gene. The report came back suggesting that my combination was consistant with "late onset".
<br />
<br />I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
<br />
<br />Good luck,
<br />
<br />Bill
<br />
<br />I would suggest that you be tested ASAP. This would prove that you are a carrier (if not hubby is right) and that hubby may be also. This would strenghten your position at the hearing.
<br />
<br />Good luck,
<br />
<br />Bill
Wow! I can't even begin to understand the stress you are going thru. I've had some experience with family looking at me like I'm crazy and paranoid. They would never comment when I would try to talk to them about my daughter. But now I think they realize how serious everything is especially after she had 28 inches of her colon removed! My husband is supportive but was always saying things like "I think she's fine" or "she'll outgrow this" but other than that he has been to every appt. and now understands this is not something that is going away. I'm glad you at least have your husband involved and it sounds like he is helping.
You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
Wow! I can't even begin to understand the stress you are going thru. I've had some experience with family looking at me like I'm crazy and paranoid. They would never comment when I would try to talk to them about my daughter. But now I think they realize how serious everything is especially after she had 28 inches of her colon removed! My husband is supportive but was always saying things like "I think she's fine" or "she'll outgrow this" but other than that he has been to every appt. and now understands this is not something that is going away. I'm glad you at least have your husband involved and it sounds like he is helping.
You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
Wow! I can't even begin to understand the stress you are going thru. I've had some experience with family looking at me like I'm crazy and paranoid. They would never comment when I would try to talk to them about my daughter. But now I think they realize how serious everything is especially after she had 28 inches of her colon removed! My husband is supportive but was always saying things like "I think she's fine" or "she'll outgrow this" but other than that he has been to every appt. and now understands this is not something that is going away. I'm glad you at least have your husband involved and it sounds like he is helping.
<br />You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
<br />You are NOT crazy!! You know your child. If treatments are working then continue them. He obviously needs them. Always trust your instinct! Good luck and God bless!!
<P>When my grandson was dx his daddy sat right there and said " there is no way he got it from me i tested negative". Well the pediatrician made a mistake in telliing us he was negative. Our Case Worker told him not only does he have the mutation she will find it. At our first clinic visit we were told he had not one but two!</P>
<P>He is not married to my dtr and seldom see's his son, he has never been to a clinic visit after his first initial hospitalzation a year and a half ago. He never asks what happens at his visits and never contributes to his life. (My husband and I spent over $10,000.00 in attorney's fees to secure child support but he still doesnt pay).</P>
<P>I guess what I'm trying to say is I FEEL your fustrations. There is nothing like having a sick child that others THINK may or not be sick but are the first to be telling you what to do how to act and where to go. Having a bum for the Dad does NOT help these matters at all. Especially when they won't take the time to speak with one physician but raise hell anytime they do see Jaden that my dtr is an unfit parent. </P>
<P>If I was you I would let him take you to court to get medical information or let him call the appointment lines himself. Perhaps forcing him legally to get tested. (As far as I know it takes two to make a CF baby). Or changing visitation since there is a change in circumstances. </P>
<P>Probably not helping but just reading your blog got my blood boiling, good luck, take care and God Bless!</P>
<P> </P>
<P>He is not married to my dtr and seldom see's his son, he has never been to a clinic visit after his first initial hospitalzation a year and a half ago. He never asks what happens at his visits and never contributes to his life. (My husband and I spent over $10,000.00 in attorney's fees to secure child support but he still doesnt pay).</P>
<P>I guess what I'm trying to say is I FEEL your fustrations. There is nothing like having a sick child that others THINK may or not be sick but are the first to be telling you what to do how to act and where to go. Having a bum for the Dad does NOT help these matters at all. Especially when they won't take the time to speak with one physician but raise hell anytime they do see Jaden that my dtr is an unfit parent. </P>
<P>If I was you I would let him take you to court to get medical information or let him call the appointment lines himself. Perhaps forcing him legally to get tested. (As far as I know it takes two to make a CF baby). Or changing visitation since there is a change in circumstances. </P>
<P>Probably not helping but just reading your blog got my blood boiling, good luck, take care and God Bless!</P>
<P> </P>
<P>When my grandson was dx his daddy sat right there and said " there is no way he got it from me i tested negative". Well the pediatrician made a mistake in telliing us he was negative. Our Case Worker told him not only does he have the mutation she will find it. At our first clinic visit we were told he had not one but two!</P>
<P>He is not married to my dtr and seldom see's his son, he has never been to a clinic visit after his first initial hospitalzation a year and a half ago. He never asks what happens at his visits and never contributes to his life. (My husband and I spent over $10,000.00 in attorney's fees to secure child support but he still doesnt pay).</P>
<P>I guess what I'm trying to say is I FEEL your fustrations. There is nothing like having a sick child that others THINK may or not be sick but are the first to be telling you what to do how to act and where to go. Having a bum for the Dad does NOT help these matters at all. Especially when they won't take the time to speak with one physician but raise hell anytime they do see Jaden that my dtr is an unfit parent. </P>
<P>If I was you I would let him take you to court to get medical information or let him call the appointment lines himself. Perhaps forcing him legally to get tested. (As far as I know it takes two to make a CF baby). Or changing visitation since there is a change in circumstances. </P>
<P>Probably not helping but just reading your blog got my blood boiling, good luck, take care and God Bless!</P>
<P></P>
<P>He is not married to my dtr and seldom see's his son, he has never been to a clinic visit after his first initial hospitalzation a year and a half ago. He never asks what happens at his visits and never contributes to his life. (My husband and I spent over $10,000.00 in attorney's fees to secure child support but he still doesnt pay).</P>
<P>I guess what I'm trying to say is I FEEL your fustrations. There is nothing like having a sick child that others THINK may or not be sick but are the first to be telling you what to do how to act and where to go. Having a bum for the Dad does NOT help these matters at all. Especially when they won't take the time to speak with one physician but raise hell anytime they do see Jaden that my dtr is an unfit parent. </P>
<P>If I was you I would let him take you to court to get medical information or let him call the appointment lines himself. Perhaps forcing him legally to get tested. (As far as I know it takes two to make a CF baby). Or changing visitation since there is a change in circumstances. </P>
<P>Probably not helping but just reading your blog got my blood boiling, good luck, take care and God Bless!</P>
<P></P>