new and unsure

SandyCheeks · Aug 27, 2008

Jennifer,
Depending on your insurance you can make an appointment without a referral. I did this about 2 years ago when my dd had sinus issues. They did an Xray that showed signifigant sinus disease and my ped told me it was normal. I decided to take her to the ENT to evaluate and they wound up doing sinus surgery.

I totally understand waiting to see what the results are. I would be interested in knowing what markers they are talking about??? It is definately easier to have the doctors on your side about something like this.

And you are right, this place is amazing <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Aug 27, 2008

Jennifer,
Depending on your insurance you can make an appointment without a referral. I did this about 2 years ago when my dd had sinus issues. They did an Xray that showed signifigant sinus disease and my ped told me it was normal. I decided to take her to the ENT to evaluate and they wound up doing sinus surgery.

I totally understand waiting to see what the results are. I would be interested in knowing what markers they are talking about??? It is definately easier to have the doctors on your side about something like this.

And you are right, this place is amazing <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Aug 27, 2008

Jennifer,
Depending on your insurance you can make an appointment without a referral. I did this about 2 years ago when my dd had sinus issues. They did an Xray that showed signifigant sinus disease and my ped told me it was normal. I decided to take her to the ENT to evaluate and they wound up doing sinus surgery.

I totally understand waiting to see what the results are. I would be interested in knowing what markers they are talking about??? It is definately easier to have the doctors on your side about something like this.

And you are right, this place is amazing <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Aug 27, 2008

Jennifer,
Depending on your insurance you can make an appointment without a referral. I did this about 2 years ago when my dd had sinus issues. They did an Xray that showed signifigant sinus disease and my ped told me it was normal. I decided to take her to the ENT to evaluate and they wound up doing sinus surgery.

I totally understand waiting to see what the results are. I would be interested in knowing what markers they are talking about??? It is definately easier to have the doctors on your side about something like this.

And you are right, this place is amazing <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Aug 27, 2008

Jennifer,
 Depending on your insurance you can make an appointment without a referral. I did this about 2 years ago when my dd had sinus issues. They did an Xray that showed signifigant sinus disease and my ped told me it was normal. I decided to take her to the ENT to evaluate and they wound up doing sinus surgery.
 
 I totally understand waiting to see what the results are. I would be interested in knowing what markers they are talking about??? It is definately easier to have the doctors on your side about something like this.
 
 And you are right, this place is amazing <img src="i/expressions/heart.gif" border="0">

jenniferdoss · Aug 27, 2008

So I don't know if this has anything to do with possibly having CF but my daughter has started waking up crying this week from naps and at night screaming . Last night I went in and she has wet sounding hiccups along with the sobbing from crying. I laid her down after calming her and she stopped breathing, it was like something was caught in her throat. Her eyes opened fast and she couldn't take a breath. I picked her up and she started breathing again but it really scared me. She doesn't seem to have a cold or anything and she didn't cough or choke when I picked her up. She just took a breath. Really weird for me. Thanks for any suggestion CF related or not.

jenniferdoss · Aug 27, 2008

So I don't know if this has anything to do with possibly having CF but my daughter has started waking up crying this week from naps and at night screaming . Last night I went in and she has wet sounding hiccups along with the sobbing from crying. I laid her down after calming her and she stopped breathing, it was like something was caught in her throat. Her eyes opened fast and she couldn't take a breath. I picked her up and she started breathing again but it really scared me. She doesn't seem to have a cold or anything and she didn't cough or choke when I picked her up. She just took a breath. Really weird for me. Thanks for any suggestion CF related or not.

jenniferdoss · Aug 27, 2008

So I don't know if this has anything to do with possibly having CF but my daughter has started waking up crying this week from naps and at night screaming . Last night I went in and she has wet sounding hiccups along with the sobbing from crying. I laid her down after calming her and she stopped breathing, it was like something was caught in her throat. Her eyes opened fast and she couldn't take a breath. I picked her up and she started breathing again but it really scared me. She doesn't seem to have a cold or anything and she didn't cough or choke when I picked her up. She just took a breath. Really weird for me. Thanks for any suggestion CF related or not.

jenniferdoss · Aug 27, 2008

So I don't know if this has anything to do with possibly having CF but my daughter has started waking up crying this week from naps and at night screaming . Last night I went in and she has wet sounding hiccups along with the sobbing from crying. I laid her down after calming her and she stopped breathing, it was like something was caught in her throat. Her eyes opened fast and she couldn't take a breath. I picked her up and she started breathing again but it really scared me. She doesn't seem to have a cold or anything and she didn't cough or choke when I picked her up. She just took a breath. Really weird for me. Thanks for any suggestion CF related or not.

jenniferdoss · Aug 27, 2008

So I don't know if this has anything to do with possibly having CF but my daughter has started waking up crying this week from naps and at night screaming . Last night I went in and she has wet sounding hiccups along with the sobbing from crying. I laid her down after calming her and she stopped breathing, it was like something was caught in her throat. Her eyes opened fast and she couldn't take a breath. I picked her up and she started breathing again but it really scared me. She doesn't seem to have a cold or anything and she didn't cough or choke when I picked her up. She just took a breath. Really weird for me. Thanks for any suggestion CF related or not.

Mrsbjolly · Sep 4, 2008

Hiya jennifer I'm sorry to hear that your daughter is poorly and like you said before hopefully it isn't CF that she is suffering from. I was really shocked though to hear that your doctor was putting off testing for cystic fibrosis. Your story sounds similar to that which my mum went through with my big sister but that was in the late seventies, I didn't imagine it could still go on. When my sister was born my mum noticed that she was not developing well and that she was also not passing normal stools. Everytime she tried to get the doctor to listen she was sent away and disregarded as a young and niave new mum. Finally by the time my sister was three she wasa diagnosed with CF, however her late diagnosis didn't fair her well and she passed away at aged 10. I too was diagnosed with cystic fibrosis but at the earlier age of eighteen months. I was not tested at birth because I seemed to show no symptoms and it wasn't until my dad checked me by tasting the sweat of my forehead recognising the distinctive saltier composition of CF sweat that alarm bells rung. Around about the same time I showed the first signs of pancreatic insufficiency. I was tested and diagnosed. It horrifies me that your doctor is not taking your concerrns seriously. You should demand a sweat test. Early diagnosis provides a better chance, limiting damage. I am 29 now and lead a satisfying life, as do many with CF. I really hope that your daughters symptoms are caused by something less severe, but if she does have CF and she is passing unhealthy stools then she probably is experiencing the stomach discomfort caused by the inability to digest food and it seems absurd that your doctor is letting this continue. I didn't have a CF look as a child nor do I have one now, that is a ridiculous comment to make. If it turns out to be CF, please be comforted in the knowledge that the future for those with CF is the brightest its ever been.

Feel free to contact me and I will help in any way I can.
Warm wishes xx

Mrsbjolly · Sep 4, 2008

Hiya jennifer I'm sorry to hear that your daughter is poorly and like you said before hopefully it isn't CF that she is suffering from. I was really shocked though to hear that your doctor was putting off testing for cystic fibrosis. Your story sounds similar to that which my mum went through with my big sister but that was in the late seventies, I didn't imagine it could still go on. When my sister was born my mum noticed that she was not developing well and that she was also not passing normal stools. Everytime she tried to get the doctor to listen she was sent away and disregarded as a young and niave new mum. Finally by the time my sister was three she wasa diagnosed with CF, however her late diagnosis didn't fair her well and she passed away at aged 10. I too was diagnosed with cystic fibrosis but at the earlier age of eighteen months. I was not tested at birth because I seemed to show no symptoms and it wasn't until my dad checked me by tasting the sweat of my forehead recognising the distinctive saltier composition of CF sweat that alarm bells rung. Around about the same time I showed the first signs of pancreatic insufficiency. I was tested and diagnosed. It horrifies me that your doctor is not taking your concerrns seriously. You should demand a sweat test. Early diagnosis provides a better chance, limiting damage. I am 29 now and lead a satisfying life, as do many with CF. I really hope that your daughters symptoms are caused by something less severe, but if she does have CF and she is passing unhealthy stools then she probably is experiencing the stomach discomfort caused by the inability to digest food and it seems absurd that your doctor is letting this continue. I didn't have a CF look as a child nor do I have one now, that is a ridiculous comment to make. If it turns out to be CF, please be comforted in the knowledge that the future for those with CF is the brightest its ever been.

Feel free to contact me and I will help in any way I can.
Warm wishes xx

Mrsbjolly · Sep 4, 2008

Hiya jennifer I'm sorry to hear that your daughter is poorly and like you said before hopefully it isn't CF that she is suffering from. I was really shocked though to hear that your doctor was putting off testing for cystic fibrosis. Your story sounds similar to that which my mum went through with my big sister but that was in the late seventies, I didn't imagine it could still go on. When my sister was born my mum noticed that she was not developing well and that she was also not passing normal stools. Everytime she tried to get the doctor to listen she was sent away and disregarded as a young and niave new mum. Finally by the time my sister was three she wasa diagnosed with CF, however her late diagnosis didn't fair her well and she passed away at aged 10. I too was diagnosed with cystic fibrosis but at the earlier age of eighteen months. I was not tested at birth because I seemed to show no symptoms and it wasn't until my dad checked me by tasting the sweat of my forehead recognising the distinctive saltier composition of CF sweat that alarm bells rung. Around about the same time I showed the first signs of pancreatic insufficiency. I was tested and diagnosed. It horrifies me that your doctor is not taking your concerrns seriously. You should demand a sweat test. Early diagnosis provides a better chance, limiting damage. I am 29 now and lead a satisfying life, as do many with CF. I really hope that your daughters symptoms are caused by something less severe, but if she does have CF and she is passing unhealthy stools then she probably is experiencing the stomach discomfort caused by the inability to digest food and it seems absurd that your doctor is letting this continue. I didn't have a CF look as a child nor do I have one now, that is a ridiculous comment to make. If it turns out to be CF, please be comforted in the knowledge that the future for those with CF is the brightest its ever been.

Feel free to contact me and I will help in any way I can.
Warm wishes xx

Mrsbjolly · Sep 4, 2008

Hiya jennifer I'm sorry to hear that your daughter is poorly and like you said before hopefully it isn't CF that she is suffering from. I was really shocked though to hear that your doctor was putting off testing for cystic fibrosis. Your story sounds similar to that which my mum went through with my big sister but that was in the late seventies, I didn't imagine it could still go on. When my sister was born my mum noticed that she was not developing well and that she was also not passing normal stools. Everytime she tried to get the doctor to listen she was sent away and disregarded as a young and niave new mum. Finally by the time my sister was three she wasa diagnosed with CF, however her late diagnosis didn't fair her well and she passed away at aged 10. I too was diagnosed with cystic fibrosis but at the earlier age of eighteen months. I was not tested at birth because I seemed to show no symptoms and it wasn't until my dad checked me by tasting the sweat of my forehead recognising the distinctive saltier composition of CF sweat that alarm bells rung. Around about the same time I showed the first signs of pancreatic insufficiency. I was tested and diagnosed. It horrifies me that your doctor is not taking your concerrns seriously. You should demand a sweat test. Early diagnosis provides a better chance, limiting damage. I am 29 now and lead a satisfying life, as do many with CF. I really hope that your daughters symptoms are caused by something less severe, but if she does have CF and she is passing unhealthy stools then she probably is experiencing the stomach discomfort caused by the inability to digest food and it seems absurd that your doctor is letting this continue. I didn't have a CF look as a child nor do I have one now, that is a ridiculous comment to make. If it turns out to be CF, please be comforted in the knowledge that the future for those with CF is the brightest its ever been.

Feel free to contact me and I will help in any way I can.
Warm wishes xx

Mrsbjolly · Sep 4, 2008

Hiya jennifer I'm sorry to hear that your daughter is poorly and like you said before hopefully it isn't CF that she is suffering from. I was really shocked though to hear that your doctor was putting off testing for cystic fibrosis. Your story sounds similar to that which my mum went through with my big sister but that was in the late seventies, I didn't imagine it could still go on. When my sister was born my mum noticed that she was not developing well and that she was also not passing normal stools. Everytime she tried to get the doctor to listen she was sent away and disregarded as a young and niave new mum. Finally by the time my sister was three she wasa diagnosed with CF, however her late diagnosis didn't fair her well and she passed away at aged 10. I too was diagnosed with cystic fibrosis but at the earlier age of eighteen months. I was not tested at birth because I seemed to show no symptoms and it wasn't until my dad checked me by tasting the sweat of my forehead recognising the distinctive saltier composition of CF sweat that alarm bells rung. Around about the same time I showed the first signs of pancreatic insufficiency. I was tested and diagnosed. It horrifies me that your doctor is not taking your concerrns seriously. You should demand a sweat test. Early diagnosis provides a better chance, limiting damage. I am 29 now and lead a satisfying life, as do many with CF. I really hope that your daughters symptoms are caused by something less severe, but if she does have CF and she is passing unhealthy stools then she probably is experiencing the stomach discomfort caused by the inability to digest food and it seems absurd that your doctor is letting this continue. I didn't have a CF look as a child nor do I have one now, that is a ridiculous comment to make. If it turns out to be CF, please be comforted in the knowledge that the future for those with CF is the brightest its ever been.
 
 Feel free to contact me and I will help in any way I can.
 Warm wishes xx

jenniferdoss · Sep 4, 2008

Thank you for the information. I went and picked up my daughter's test results and she has some abnormal values. But until the Dr. calls to discuss (still waiting on the allergy test) I don't know if they really mean anything. Certainly none of the blood work could point to CF. If they are inconclusive then I am going to tell her I want a sweat test done but there are no accredited centers near me. The nearest one (I think) is an 8 hour drive. I am a stay at home mom of 4 and don't know if I could do that. Financially and with my 3 others needing me. She said we could do the sweat test if the blood work didn't show anything. I think she is trying to rule out things first instead of jumping to worst case scenario. I just really want to know what is going on. Waiting is always the hardest. Thanks again

Jennifer

jenniferdoss · Sep 4, 2008

Thank you for the information. I went and picked up my daughter's test results and she has some abnormal values. But until the Dr. calls to discuss (still waiting on the allergy test) I don't know if they really mean anything. Certainly none of the blood work could point to CF. If they are inconclusive then I am going to tell her I want a sweat test done but there are no accredited centers near me. The nearest one (I think) is an 8 hour drive. I am a stay at home mom of 4 and don't know if I could do that. Financially and with my 3 others needing me. She said we could do the sweat test if the blood work didn't show anything. I think she is trying to rule out things first instead of jumping to worst case scenario. I just really want to know what is going on. Waiting is always the hardest. Thanks again

Jennifer

jenniferdoss · Sep 4, 2008

Thank you for the information. I went and picked up my daughter's test results and she has some abnormal values. But until the Dr. calls to discuss (still waiting on the allergy test) I don't know if they really mean anything. Certainly none of the blood work could point to CF. If they are inconclusive then I am going to tell her I want a sweat test done but there are no accredited centers near me. The nearest one (I think) is an 8 hour drive. I am a stay at home mom of 4 and don't know if I could do that. Financially and with my 3 others needing me. She said we could do the sweat test if the blood work didn't show anything. I think she is trying to rule out things first instead of jumping to worst case scenario. I just really want to know what is going on. Waiting is always the hardest. Thanks again

Jennifer

jenniferdoss · Sep 4, 2008

Thank you for the information. I went and picked up my daughter's test results and she has some abnormal values. But until the Dr. calls to discuss (still waiting on the allergy test) I don't know if they really mean anything. Certainly none of the blood work could point to CF. If they are inconclusive then I am going to tell her I want a sweat test done but there are no accredited centers near me. The nearest one (I think) is an 8 hour drive. I am a stay at home mom of 4 and don't know if I could do that. Financially and with my 3 others needing me. She said we could do the sweat test if the blood work didn't show anything. I think she is trying to rule out things first instead of jumping to worst case scenario. I just really want to know what is going on. Waiting is always the hardest. Thanks again

Jennifer

jenniferdoss · Sep 4, 2008

Thank you for the information. I went and picked up my daughter's test results and she has some abnormal values. But until the Dr. calls to discuss (still waiting on the allergy test) I don't know if they really mean anything. Certainly none of the blood work could point to CF. If they are inconclusive then I am going to tell her I want a sweat test done but there are no accredited centers near me. The nearest one (I think) is an 8 hour drive. I am a stay at home mom of 4 and don't know if I could do that. Financially and with my 3 others needing me. She said we could do the sweat test if the blood work didn't show anything. I think she is trying to rule out things first instead of jumping to worst case scenario. I just really want to know what is going on. Waiting is always the hardest. Thanks again
 
 Jennifer

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