Hello this is my first message to this sight. I am a mother of 4 and my 4 yr old has CF. He was diagnosed at 2mos. old through genetic testing. He has not been sick since. He will be 5 in September and he has been off all meds for 2 yrs now due to insurance issues. I'm really scared. I think I am making him worse. His pediatrician says he is perfectly healthy. Bloodwork, weight gain,and lungs are clear. I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.
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Very confused mother
- Thread starter angluna
- Start date
Hello this is my first message to this sight. I am a mother of 4 and my 4 yr old has CF. He was diagnosed at 2mos. old through genetic testing. He has not been sick since. He will be 5 in September and he has been off all meds for 2 yrs now due to insurance issues. I'm really scared. I think I am making him worse. His pediatrician says he is perfectly healthy. Bloodwork, weight gain,and lungs are clear. I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.
Hello this is my first message to this sight. I am a mother of 4 and my 4 yr old has CF. He was diagnosed at 2mos. old through genetic testing. He has not been sick since. He will be 5 in September and he has been off all meds for 2 yrs now due to insurance issues. I'm really scared. I think I am making him worse. His pediatrician says he is perfectly healthy. Bloodwork, weight gain,and lungs are clear. I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.
There are many programs that can help with insurance/medication issues, and there is a thread around here somewhere that can help you with that- if I can't find it to bump it for you, then I'm sure someone will be along to help soon. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Is your son going to a cf clinic? Or is this just his pediatrician?
Is your son going to a cf clinic? Or is this just his pediatrician?
There are many programs that can help with insurance/medication issues, and there is a thread around here somewhere that can help you with that- if I can't find it to bump it for you, then I'm sure someone will be along to help soon. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Is your son going to a cf clinic? Or is this just his pediatrician?
Is your son going to a cf clinic? Or is this just his pediatrician?
There are many programs that can help with insurance/medication issues, and there is a thread around here somewhere that can help you with that- if I can't find it to bump it for you, then I'm sure someone will be along to help soon. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Is your son going to a cf clinic? Or is this just his pediatrician?
Is your son going to a cf clinic? Or is this just his pediatrician?
M
Mommafirst
Guest
I don't think a pediatrician runs the kinds of tests that would give insight to some of the earlier CF issues. I would say that working with a good CF center would be important. There are lots of programs that can help you to get the care you need and the CF center will have a social worker to help you identify the programs you qualify for. I know you are scared and the cost may feel imposing, but keeping your little boy healthy for as long as possible will actually save money in the big picture.
Its great to hear he's doing so well.
Its great to hear he's doing so well.
M
Mommafirst
Guest
I don't think a pediatrician runs the kinds of tests that would give insight to some of the earlier CF issues. I would say that working with a good CF center would be important. There are lots of programs that can help you to get the care you need and the CF center will have a social worker to help you identify the programs you qualify for. I know you are scared and the cost may feel imposing, but keeping your little boy healthy for as long as possible will actually save money in the big picture.
Its great to hear he's doing so well.
Its great to hear he's doing so well.
M
Mommafirst
Guest
I don't think a pediatrician runs the kinds of tests that would give insight to some of the earlier CF issues. I would say that working with a good CF center would be important. There are lots of programs that can help you to get the care you need and the CF center will have a social worker to help you identify the programs you qualify for. I know you are scared and the cost may feel imposing, but keeping your little boy healthy for as long as possible will actually save money in the big picture.
Its great to hear he's doing so well.
Its great to hear he's doing so well.
Thank You for your reply. My son was going to a CF clinic but due to all my insurance problems I have to wait for another authorization to go through. I finally got my insurance issues settled. It was his pediatrician, but she has lots of CF patients and works very closely with CF teams.
Thank You for your reply. My son was going to a CF clinic but due to all my insurance problems I have to wait for another authorization to go through. I finally got my insurance issues settled. It was his pediatrician, but she has lots of CF patients and works very closely with CF teams.
Thank You for your reply. My son was going to a CF clinic but due to all my insurance problems I have to wait for another authorization to go through. I finally got my insurance issues settled. It was his pediatrician, but she has lots of CF patients and works very closely with CF teams.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angluna</b></i>
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angluna</b></i>
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>angluna</b></i>
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
I am not very familiar with all the gene testing but what can you get from finding out the specific mutations? Does this effect how healthy he is or is his doctor lying to me. Please help I am very concerned and confused. Any comments or suggestions would be helpful.</end quote></div>
Knowing mutations is nice to know, but not essential.
Mutations can affect severity of CF.... but as you will see on this site, people with the same mutation combinations have very different clinical outcomes. Even siblings, who have the same mutations, have different clinical outcomes.
What affects CF is preventative care (not treating symptoms...but doing treatments to prevent symptoms from surfacing), compliance to meds, and aggressive therapy if/when the CFer gets sick. These things all affect CF clinical outcomes dramatically.
thank you for your response being that the preventative therapy is what makes or breaks do you think I have done more damage by him not being on meds at all for two years straight. After being on meds since he was diagnosed I have had him off for two years due to insurance. The only concern I have is his constant diarrhea. I finally got insurance taken care of but what should I do????
thank you for your response being that the preventative therapy is what makes or breaks do you think I have done more damage by him not being on meds at all for two years straight. After being on meds since he was diagnosed I have had him off for two years due to insurance. The only concern I have is his constant diarrhea. I finally got insurance taken care of but what should I do????
thank you for your response being that the preventative therapy is what makes or breaks do you think I have done more damage by him not being on meds at all for two years straight. After being on meds since he was diagnosed I have had him off for two years due to insurance. The only concern I have is his constant diarrhea. I finally got insurance taken care of but what should I do????
In my opinion, if you have coverage now, and you have a concern with his diarrhea, why not get him back on enzymes asap? ( I assume that was one of his previous meds...) I have a 4 year old, no cf...and can' t imagine how life would be if she had constant potty issues! I think you need to get to a cf center, regardless of how familar your ped is with cf. They will get you back on the best preventative course. It will be worth it in the long run.
In my opinion, if you have coverage now, and you have a concern with his diarrhea, why not get him back on enzymes asap? ( I assume that was one of his previous meds...) I have a 4 year old, no cf...and can' t imagine how life would be if she had constant potty issues! I think you need to get to a cf center, regardless of how familar your ped is with cf. They will get you back on the best preventative course. It will be worth it in the long run.