waiting for results

[amyr]

Sorry for the long posting have a very long hx. I have 4 children 12 & under. All the sickness started when my first was 4 months. He had chronic ear infections bronchetis stomach issues... When #2 came along he put # one (Who was on anti biotics more than15 X's in 12 months) to shame. Constipated, conjunctivitus, reflux, FTT, penomania, bronchetialitis, RSV, and ear infections all by 5 months. They did a swaet test at 5 months it was 12 so they said no cf. His symptoms got worse and eventually they said all just allergies. At 6 yrs went to a cardiologist for chest pain (after spending 3 yrs. seeing a G.I. at Boston Childrens and being told by him that we all needed some behavioral therapy) he was diagnosed with GERD and places on nexium20mg due to ulcerations throughtout his gi tract. He also had his tonsils out b/c recurrent strep. He hemmoraged after the surgery. In the mean time tested off the charts for environmental and food allergies. basically allergis to EVERYTHING. Fluctuations between constipation & dirreaha diagnosed with cdif due to antibiotic over use. # 3 had sinusitus and reflux from day one. Her cord never fell off so they cut it off she hemmoraged they had to cautorize it 3 x's. Fevers of 105 with hallucinations. Recurrent strep Hospitialized several X's for dehydration due to vomiting and not responding to antibiotics. Recurrent bronchetis & pnemonia with hospitalizations. She hemmoraged also after tonsils removed Both # 2 & 3 anemic and vitamin k deficant. She has possible bleeding disorder. # 4 hospitialized at 3 wks with meningitis. RSV by 4 months despite the synigas shots. Reflux, constipation & dirreaha, sinusitus recurrent pnemonia croup requiring er treatments. All four not even on the charts for weight. All dx with asthma.3 out of 4 just went in for sweat tests. Two were 24 & 25 and one was in the mid 40's. Is this cf?? I am terrified but in desperate need of answers. I can't have one more Dr. make me feel crazy. They did a CF mutation test on the borderline one and the results will take a few week. Any advice would be great!

Amy

 

[amyr]

Sorry for the long posting have a very long hx. I have 4 children 12 & under. All the sickness started when my first was 4 months. He had chronic ear infections bronchetis stomach issues... When #2 came along he put # one (Who was on anti biotics more than15 X's in 12 months) to shame. Constipated, conjunctivitus, reflux, FTT, penomania, bronchetialitis, RSV, and ear infections all by 5 months. They did a swaet test at 5 months it was 12 so they said no cf. His symptoms got worse and eventually they said all just allergies. At 6 yrs went to a cardiologist for chest pain (after spending 3 yrs. seeing a G.I. at Boston Childrens and being told by him that we all needed some behavioral therapy) he was diagnosed with GERD and places on nexium20mg due to ulcerations throughtout his gi tract. He also had his tonsils out b/c recurrent strep. He hemmoraged after the surgery. In the mean time tested off the charts for environmental and food allergies. basically allergis to EVERYTHING. Fluctuations between constipation & dirreaha diagnosed with cdif due to antibiotic over use. # 3 had sinusitus and reflux from day one. Her cord never fell off so they cut it off she hemmoraged they had to cautorize it 3 x's. Fevers of 105 with hallucinations. Recurrent strep Hospitialized several X's for dehydration due to vomiting and not responding to antibiotics. Recurrent bronchetis & pnemonia with hospitalizations. She hemmoraged also after tonsils removed Both # 2 & 3 anemic and vitamin k deficant. She has possible bleeding disorder. # 4 hospitialized at 3 wks with meningitis. RSV by 4 months despite the synigas shots. Reflux, constipation & dirreaha, sinusitus recurrent pnemonia croup requiring er treatments. All four not even on the charts for weight. All dx with asthma.3 out of 4 just went in for sweat tests. Two were 24 & 25 and one was in the mid 40's. Is this cf?? I am terrified but in desperate need of answers. I can't have one more Dr. make me feel crazy. They did a CF mutation test on the borderline one and the results will take a few week. Any advice would be great!

Amy

 

[amyr]

Sorry for the long posting have a very long hx. I have 4 children 12 & under. All the sickness started when my first was 4 months. He had chronic ear infections bronchetis stomach issues... When #2 came along he put # one (Who was on anti biotics more than15 X's in 12 months) to shame. Constipated, conjunctivitus, reflux, FTT, penomania, bronchetialitis, RSV, and ear infections all by 5 months. They did a swaet test at 5 months it was 12 so they said no cf. His symptoms got worse and eventually they said all just allergies. At 6 yrs went to a cardiologist for chest pain (after spending 3 yrs. seeing a G.I. at Boston Childrens and being told by him that we all needed some behavioral therapy) he was diagnosed with GERD and places on nexium20mg due to ulcerations throughtout his gi tract. He also had his tonsils out b/c recurrent strep. He hemmoraged after the surgery. In the mean time tested off the charts for environmental and food allergies. basically allergis to EVERYTHING. Fluctuations between constipation & dirreaha diagnosed with cdif due to antibiotic over use. # 3 had sinusitus and reflux from day one. Her cord never fell off so they cut it off she hemmoraged they had to cautorize it 3 x's. Fevers of 105 with hallucinations. Recurrent strep Hospitialized several X's for dehydration due to vomiting and not responding to antibiotics. Recurrent bronchetis & pnemonia with hospitalizations. She hemmoraged also after tonsils removed Both # 2 & 3 anemic and vitamin k deficant. She has possible bleeding disorder. # 4 hospitialized at 3 wks with meningitis. RSV by 4 months despite the synigas shots. Reflux, constipation & dirreaha, sinusitus recurrent pnemonia croup requiring er treatments. All four not even on the charts for weight. All dx with asthma.3 out of 4 just went in for sweat tests. Two were 24 & 25 and one was in the mid 40's. Is this cf?? I am terrified but in desperate need of answers. I can't have one more Dr. make me feel crazy. They did a CF mutation test on the borderline one and the results will take a few week. Any advice would be great!

Amy

 

[amyr]

Sorry for the long posting have a very long hx. I have 4 children 12 & under. All the sickness started when my first was 4 months. He had chronic ear infections bronchetis stomach issues... When #2 came along he put # one (Who was on anti biotics more than15 X's in 12 months) to shame. Constipated, conjunctivitus, reflux, FTT, penomania, bronchetialitis, RSV, and ear infections all by 5 months. They did a swaet test at 5 months it was 12 so they said no cf. His symptoms got worse and eventually they said all just allergies. At 6 yrs went to a cardiologist for chest pain (after spending 3 yrs. seeing a G.I. at Boston Childrens and being told by him that we all needed some behavioral therapy) he was diagnosed with GERD and places on nexium20mg due to ulcerations throughtout his gi tract. He also had his tonsils out b/c recurrent strep. He hemmoraged after the surgery. In the mean time tested off the charts for environmental and food allergies. basically allergis to EVERYTHING. Fluctuations between constipation & dirreaha diagnosed with cdif due to antibiotic over use. # 3 had sinusitus and reflux from day one. Her cord never fell off so they cut it off she hemmoraged they had to cautorize it 3 x's. Fevers of 105 with hallucinations. Recurrent strep Hospitialized several X's for dehydration due to vomiting and not responding to antibiotics. Recurrent bronchetis & pnemonia with hospitalizations. She hemmoraged also after tonsils removed Both # 2 & 3 anemic and vitamin k deficant. She has possible bleeding disorder. # 4 hospitialized at 3 wks with meningitis. RSV by 4 months despite the synigas shots. Reflux, constipation & dirreaha, sinusitus recurrent pnemonia croup requiring er treatments. All four not even on the charts for weight. All dx with asthma.3 out of 4 just went in for sweat tests. Two were 24 & 25 and one was in the mid 40's. Is this cf?? I am terrified but in desperate need of answers. I can't have one more Dr. make me feel crazy. They did a CF mutation test on the borderline one and the results will take a few week. Any advice would be great!

Amy

 

[amyr]

Sorry for the long posting have a very long hx. I have 4 children 12 & under. All the sickness started when my first was 4 months. He had chronic ear infections bronchetis stomach issues... When #2 came along he put # one (Who was on anti biotics more than15 X's in 12 months) to shame. Constipated, conjunctivitus, reflux, FTT, penomania, bronchetialitis, RSV, and ear infections all by 5 months. They did a swaet test at 5 months it was 12 so they said no cf. His symptoms got worse and eventually they said all just allergies. At 6 yrs went to a cardiologist for chest pain (after spending 3 yrs. seeing a G.I. at Boston Childrens and being told by him that we all needed some behavioral therapy) he was diagnosed with GERD and places on nexium20mg due to ulcerations throughtout his gi tract. He also had his tonsils out b/c recurrent strep. He hemmoraged after the surgery. In the mean time tested off the charts for environmental and food allergies. basically allergis to EVERYTHING. Fluctuations between constipation & dirreaha diagnosed with cdif due to antibiotic over use. # 3 had sinusitus and reflux from day one. Her cord never fell off so they cut it off she hemmoraged they had to cautorize it 3 x's. Fevers of 105 with hallucinations. Recurrent strep Hospitialized several X's for dehydration due to vomiting and not responding to antibiotics. Recurrent bronchetis & pnemonia with hospitalizations. She hemmoraged also after tonsils removed Both # 2 & 3 anemic and vitamin k deficant. She has possible bleeding disorder. # 4 hospitialized at 3 wks with meningitis. RSV by 4 months despite the synigas shots. Reflux, constipation & dirreaha, sinusitus recurrent pnemonia croup requiring er treatments. All four not even on the charts for weight. All dx with asthma.3 out of 4 just went in for sweat tests. Two were 24 & 25 and one was in the mid 40's. Is this cf?? I am terrified but in desperate need of answers. I can't have one more Dr. make me feel crazy. They did a CF mutation test on the borderline one and the results will take a few week. Any advice would be great!

Amy

 

[sdelorenzo]

Welcome! I am sorry to hear about everything your kids have been through. Could it be cf? Maybe? Do you know what type of genetic testing your child had? They would most likely need an Ambry test that tests for thousands of mutations not just the 40 or so that some "routine" tests test for. Usually if you have cf and have a low or borderling sweat test you often have a less common mutation and need the expanded Ambry test to find the gene. Drs don't often know much about cf, so while difficult, don't let any drs make you feel crazy. Move on to another dr until you get 100% definitive answers for your kids. Is it unlikely that 4/4 would have cf, no so that is a positive for you. But 3/4 of grandkids on my husbands side have cf, it is possible, but rare as you probably know. The diagnosis of cf is difficult, but it does come with some solutions (medications, treatments) to problems our kids face. I would suggest that you find the closet cf center to you and make an appt with the head of the clinic. Go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>Hopefully you can get some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf

 

[sdelorenzo]

Welcome! I am sorry to hear about everything your kids have been through. Could it be cf? Maybe? Do you know what type of genetic testing your child had? They would most likely need an Ambry test that tests for thousands of mutations not just the 40 or so that some "routine" tests test for. Usually if you have cf and have a low or borderling sweat test you often have a less common mutation and need the expanded Ambry test to find the gene. Drs don't often know much about cf, so while difficult, don't let any drs make you feel crazy. Move on to another dr until you get 100% definitive answers for your kids. Is it unlikely that 4/4 would have cf, no so that is a positive for you. But 3/4 of grandkids on my husbands side have cf, it is possible, but rare as you probably know. The diagnosis of cf is difficult, but it does come with some solutions (medications, treatments) to problems our kids face. I would suggest that you find the closet cf center to you and make an appt with the head of the clinic. Go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>Hopefully you can get some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf

 

[sdelorenzo]

Welcome! I am sorry to hear about everything your kids have been through. Could it be cf? Maybe? Do you know what type of genetic testing your child had? They would most likely need an Ambry test that tests for thousands of mutations not just the 40 or so that some "routine" tests test for. Usually if you have cf and have a low or borderling sweat test you often have a less common mutation and need the expanded Ambry test to find the gene. Drs don't often know much about cf, so while difficult, don't let any drs make you feel crazy. Move on to another dr until you get 100% definitive answers for your kids. Is it unlikely that 4/4 would have cf, no so that is a positive for you. But 3/4 of grandkids on my husbands side have cf, it is possible, but rare as you probably know. The diagnosis of cf is difficult, but it does come with some solutions (medications, treatments) to problems our kids face. I would suggest that you find the closet cf center to you and make an appt with the head of the clinic. Go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>Hopefully you can get some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf

 

[sdelorenzo]

Welcome! I am sorry to hear about everything your kids have been through. Could it be cf? Maybe? Do you know what type of genetic testing your child had? They would most likely need an Ambry test that tests for thousands of mutations not just the 40 or so that some "routine" tests test for. Usually if you have cf and have a low or borderling sweat test you often have a less common mutation and need the expanded Ambry test to find the gene. Drs don't often know much about cf, so while difficult, don't let any drs make you feel crazy. Move on to another dr until you get 100% definitive answers for your kids. Is it unlikely that 4/4 would have cf, no so that is a positive for you. But 3/4 of grandkids on my husbands side have cf, it is possible, but rare as you probably know. The diagnosis of cf is difficult, but it does come with some solutions (medications, treatments) to problems our kids face. I would suggest that you find the closet cf center to you and make an appt with the head of the clinic. Go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>Hopefully you can get some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf

 

[sdelorenzo]

Welcome! I am sorry to hear about everything your kids have been through. Could it be cf? Maybe? Do you know what type of genetic testing your child had? They would most likely need an Ambry test that tests for thousands of mutations not just the 40 or so that some "routine" tests test for. Usually if you have cf and have a low or borderling sweat test you often have a less common mutation and need the expanded Ambry test to find the gene. Drs don't often know much about cf, so while difficult, don't let any drs make you feel crazy. Move on to another dr until you get 100% definitive answers for your kids. Is it unlikely that 4/4 would have cf, no so that is a positive for you. But 3/4 of grandkids on my husbands side have cf, it is possible, but rare as you probably know. The diagnosis of cf is difficult, but it does come with some solutions (medications, treatments) to problems our kids face. I would suggest that you find the closet cf center to you and make an appt with the head of the clinic. Go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/
">http://www.cff.org/LivingWithC...ccreditedCareCenters/
</a>Hopefully you can get some answers soon.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf

 

[Alyssa]

Welcome - wow, you certainly have had your hands full!

In my opinion they should all be genetically tested for all CF genes. There are 1561 known CF genes -- to test for anything less is pointless.

Now, about the sweat test numbers of 24, 25 and mid 40's..... there are a least a dozen people on this site whose sweat test numbers are below 40 and genetic testing has shown two CF genes. See my blog for complete details about my kids and their sweat test numbers. Others have reported having numbers down into the single digits and teens, but most commonly they test out in the 20's so I would really recommend further testing on all of the kids.

Find out how many genes they are looking for on the one child that has been tested. My guess is they did not run a full panel. If it comes back with two CF genes then no need to push, but if they only find one or none and they tested for anything less than ALL known genes... keep pushing. At that point it would probably be easiest to get full testing on the one, if you find the genes then you know which ones to test for for the rest of the children.

 

[Alyssa]

Welcome - wow, you certainly have had your hands full!

In my opinion they should all be genetically tested for all CF genes. There are 1561 known CF genes -- to test for anything less is pointless.

Now, about the sweat test numbers of 24, 25 and mid 40's..... there are a least a dozen people on this site whose sweat test numbers are below 40 and genetic testing has shown two CF genes. See my blog for complete details about my kids and their sweat test numbers. Others have reported having numbers down into the single digits and teens, but most commonly they test out in the 20's so I would really recommend further testing on all of the kids.

Find out how many genes they are looking for on the one child that has been tested. My guess is they did not run a full panel. If it comes back with two CF genes then no need to push, but if they only find one or none and they tested for anything less than ALL known genes... keep pushing. At that point it would probably be easiest to get full testing on the one, if you find the genes then you know which ones to test for for the rest of the children.

 

[Alyssa]

Welcome - wow, you certainly have had your hands full!

In my opinion they should all be genetically tested for all CF genes. There are 1561 known CF genes -- to test for anything less is pointless.

Now, about the sweat test numbers of 24, 25 and mid 40's..... there are a least a dozen people on this site whose sweat test numbers are below 40 and genetic testing has shown two CF genes. See my blog for complete details about my kids and their sweat test numbers. Others have reported having numbers down into the single digits and teens, but most commonly they test out in the 20's so I would really recommend further testing on all of the kids.

Find out how many genes they are looking for on the one child that has been tested. My guess is they did not run a full panel. If it comes back with two CF genes then no need to push, but if they only find one or none and they tested for anything less than ALL known genes... keep pushing. At that point it would probably be easiest to get full testing on the one, if you find the genes then you know which ones to test for for the rest of the children.

 

[Alyssa]

Welcome - wow, you certainly have had your hands full!

In my opinion they should all be genetically tested for all CF genes. There are 1561 known CF genes -- to test for anything less is pointless.

Now, about the sweat test numbers of 24, 25 and mid 40's..... there are a least a dozen people on this site whose sweat test numbers are below 40 and genetic testing has shown two CF genes. See my blog for complete details about my kids and their sweat test numbers. Others have reported having numbers down into the single digits and teens, but most commonly they test out in the 20's so I would really recommend further testing on all of the kids.

Find out how many genes they are looking for on the one child that has been tested. My guess is they did not run a full panel. If it comes back with two CF genes then no need to push, but if they only find one or none and they tested for anything less than ALL known genes... keep pushing. At that point it would probably be easiest to get full testing on the one, if you find the genes then you know which ones to test for for the rest of the children.

 

[Alyssa]

Welcome - wow, you certainly have had your hands full!

In my opinion they should all be genetically tested for all CF genes. There are 1561 known CF genes -- to test for anything less is pointless.

Now, about the sweat test numbers of 24, 25 and mid 40's..... there are a least a dozen people on this site whose sweat test numbers are below 40 and genetic testing has shown two CF genes. See my blog for complete details about my kids and their sweat test numbers. Others have reported having numbers down into the single digits and teens, but most commonly they test out in the 20's so I would really recommend further testing on all of the kids.

Find out how many genes they are looking for on the one child that has been tested. My guess is they did not run a full panel. If it comes back with two CF genes then no need to push, but if they only find one or none and they tested for anything less than ALL known genes... keep pushing. At that point it would probably be easiest to get full testing on the one, if you find the genes then you know which ones to test for for the rest of the children.

 

[amyr]

Thanks so much!! I just wrote another very long posting and hit something that made it disappear I dont know if it will show up somewhere on the sight if it does sorry for repeating. The sum of it was I do believe my family has a version of cf myself included. I lost a sister 13 yrs ago due to an un known illness. They dx her with environemental illness basically allergic to the world. She had no immune system. She had terrible digestive issues they attributed to food allergies despite negetive results. She was eventually told she was crazy and most of it was in her head. She didn't want to continue living in hell so she gave up and it got the best of her. my brother spent his childhood sick. My parents had to do posteral draniage with him nightly until he would throw up the mucus. My other sister was hospitalized with penomonia and had and still has chronic sinus infections. They have been trying to figure out what is wrong with her for years. She has an elevated sed rate is anemic and feels sick more often than not. I had FTT as a child and was teased for being so small. I didn't start with my "allergy symptoms until highschool despite negative skin testing. I havn't gone a day in my life for 20 years w/o having terrible post nasal drip. I have been on every allergy nasal spray with only partial relief. I wake up several nights a week choking on my mucus it's just a part of my life. I have and have always had sinus polops. No meds help. I am dependant on inhalers dispite being on allergy /asthma meds. I also live on 80 mg of nexium with only minimal relief. Even at a weight of 118lbs I couldn't comfortably button my pants . I live in sweats due to constant bloating. The only time my stomach is comfortable is when I starve myself. I was convinced it was all food allergies however the only thing I am allergic to is shellfish. I have just accepted this as my life and convinced myself maybe all my symptoms are stress related. I do suffer from anxiety as I wake up in the middle of the night if lying on my back with feeling like my chest is collapsing on me once I turn on my side I feel better. After spending the last two days on this site I feel like I am not crazy. If the genetic tests come back negitive i will keep going until we find out wich mutation it is. I am a runner and have always thought it was normal to have white flaky stuff appear on my skin after my sweat dries. Wow this sight is amazing and oddly enough I feel better. I am going to see my childrens pulmanologist this week and will have a sweat test myself. Thanks so much!!
Amy

 

[amyr]

Thanks so much!! I just wrote another very long posting and hit something that made it disappear I dont know if it will show up somewhere on the sight if it does sorry for repeating. The sum of it was I do believe my family has a version of cf myself included. I lost a sister 13 yrs ago due to an un known illness. They dx her with environemental illness basically allergic to the world. She had no immune system. She had terrible digestive issues they attributed to food allergies despite negetive results. She was eventually told she was crazy and most of it was in her head. She didn't want to continue living in hell so she gave up and it got the best of her. my brother spent his childhood sick. My parents had to do posteral draniage with him nightly until he would throw up the mucus. My other sister was hospitalized with penomonia and had and still has chronic sinus infections. They have been trying to figure out what is wrong with her for years. She has an elevated sed rate is anemic and feels sick more often than not. I had FTT as a child and was teased for being so small. I didn't start with my "allergy symptoms until highschool despite negative skin testing. I havn't gone a day in my life for 20 years w/o having terrible post nasal drip. I have been on every allergy nasal spray with only partial relief. I wake up several nights a week choking on my mucus it's just a part of my life. I have and have always had sinus polops. No meds help. I am dependant on inhalers dispite being on allergy /asthma meds. I also live on 80 mg of nexium with only minimal relief. Even at a weight of 118lbs I couldn't comfortably button my pants . I live in sweats due to constant bloating. The only time my stomach is comfortable is when I starve myself. I was convinced it was all food allergies however the only thing I am allergic to is shellfish. I have just accepted this as my life and convinced myself maybe all my symptoms are stress related. I do suffer from anxiety as I wake up in the middle of the night if lying on my back with feeling like my chest is collapsing on me once I turn on my side I feel better. After spending the last two days on this site I feel like I am not crazy. If the genetic tests come back negitive i will keep going until we find out wich mutation it is. I am a runner and have always thought it was normal to have white flaky stuff appear on my skin after my sweat dries. Wow this sight is amazing and oddly enough I feel better. I am going to see my childrens pulmanologist this week and will have a sweat test myself. Thanks so much!!
Amy

 

[amyr]

Thanks so much!! I just wrote another very long posting and hit something that made it disappear I dont know if it will show up somewhere on the sight if it does sorry for repeating. The sum of it was I do believe my family has a version of cf myself included. I lost a sister 13 yrs ago due to an un known illness. They dx her with environemental illness basically allergic to the world. She had no immune system. She had terrible digestive issues they attributed to food allergies despite negetive results. She was eventually told she was crazy and most of it was in her head. She didn't want to continue living in hell so she gave up and it got the best of her. my brother spent his childhood sick. My parents had to do posteral draniage with him nightly until he would throw up the mucus. My other sister was hospitalized with penomonia and had and still has chronic sinus infections. They have been trying to figure out what is wrong with her for years. She has an elevated sed rate is anemic and feels sick more often than not. I had FTT as a child and was teased for being so small. I didn't start with my "allergy symptoms until highschool despite negative skin testing. I havn't gone a day in my life for 20 years w/o having terrible post nasal drip. I have been on every allergy nasal spray with only partial relief. I wake up several nights a week choking on my mucus it's just a part of my life. I have and have always had sinus polops. No meds help. I am dependant on inhalers dispite being on allergy /asthma meds. I also live on 80 mg of nexium with only minimal relief. Even at a weight of 118lbs I couldn't comfortably button my pants . I live in sweats due to constant bloating. The only time my stomach is comfortable is when I starve myself. I was convinced it was all food allergies however the only thing I am allergic to is shellfish. I have just accepted this as my life and convinced myself maybe all my symptoms are stress related. I do suffer from anxiety as I wake up in the middle of the night if lying on my back with feeling like my chest is collapsing on me once I turn on my side I feel better. After spending the last two days on this site I feel like I am not crazy. If the genetic tests come back negitive i will keep going until we find out wich mutation it is. I am a runner and have always thought it was normal to have white flaky stuff appear on my skin after my sweat dries. Wow this sight is amazing and oddly enough I feel better. I am going to see my childrens pulmanologist this week and will have a sweat test myself. Thanks so much!!
Amy

 

[amyr]

Thanks so much!! I just wrote another very long posting and hit something that made it disappear I dont know if it will show up somewhere on the sight if it does sorry for repeating. The sum of it was I do believe my family has a version of cf myself included. I lost a sister 13 yrs ago due to an un known illness. They dx her with environemental illness basically allergic to the world. She had no immune system. She had terrible digestive issues they attributed to food allergies despite negetive results. She was eventually told she was crazy and most of it was in her head. She didn't want to continue living in hell so she gave up and it got the best of her. my brother spent his childhood sick. My parents had to do posteral draniage with him nightly until he would throw up the mucus. My other sister was hospitalized with penomonia and had and still has chronic sinus infections. They have been trying to figure out what is wrong with her for years. She has an elevated sed rate is anemic and feels sick more often than not. I had FTT as a child and was teased for being so small. I didn't start with my "allergy symptoms until highschool despite negative skin testing. I havn't gone a day in my life for 20 years w/o having terrible post nasal drip. I have been on every allergy nasal spray with only partial relief. I wake up several nights a week choking on my mucus it's just a part of my life. I have and have always had sinus polops. No meds help. I am dependant on inhalers dispite being on allergy /asthma meds. I also live on 80 mg of nexium with only minimal relief. Even at a weight of 118lbs I couldn't comfortably button my pants . I live in sweats due to constant bloating. The only time my stomach is comfortable is when I starve myself. I was convinced it was all food allergies however the only thing I am allergic to is shellfish. I have just accepted this as my life and convinced myself maybe all my symptoms are stress related. I do suffer from anxiety as I wake up in the middle of the night if lying on my back with feeling like my chest is collapsing on me once I turn on my side I feel better. After spending the last two days on this site I feel like I am not crazy. If the genetic tests come back negitive i will keep going until we find out wich mutation it is. I am a runner and have always thought it was normal to have white flaky stuff appear on my skin after my sweat dries. Wow this sight is amazing and oddly enough I feel better. I am going to see my childrens pulmanologist this week and will have a sweat test myself. Thanks so much!!
Amy

 

[amyr]

Thanks so much!! I just wrote another very long posting and hit something that made it disappear I dont know if it will show up somewhere on the sight if it does sorry for repeating. The sum of it was I do believe my family has a version of cf myself included. I lost a sister 13 yrs ago due to an un known illness. They dx her with environemental illness basically allergic to the world. She had no immune system. She had terrible digestive issues they attributed to food allergies despite negetive results. She was eventually told she was crazy and most of it was in her head. She didn't want to continue living in hell so she gave up and it got the best of her. my brother spent his childhood sick. My parents had to do posteral draniage with him nightly until he would throw up the mucus. My other sister was hospitalized with penomonia and had and still has chronic sinus infections. They have been trying to figure out what is wrong with her for years. She has an elevated sed rate is anemic and feels sick more often than not. I had FTT as a child and was teased for being so small. I didn't start with my "allergy symptoms until highschool despite negative skin testing. I havn't gone a day in my life for 20 years w/o having terrible post nasal drip. I have been on every allergy nasal spray with only partial relief. I wake up several nights a week choking on my mucus it's just a part of my life. I have and have always had sinus polops. No meds help. I am dependant on inhalers dispite being on allergy /asthma meds. I also live on 80 mg of nexium with only minimal relief. Even at a weight of 118lbs I couldn't comfortably button my pants . I live in sweats due to constant bloating. The only time my stomach is comfortable is when I starve myself. I was convinced it was all food allergies however the only thing I am allergic to is shellfish. I have just accepted this as my life and convinced myself maybe all my symptoms are stress related. I do suffer from anxiety as I wake up in the middle of the night if lying on my back with feeling like my chest is collapsing on me once I turn on my side I feel better. After spending the last two days on this site I feel like I am not crazy. If the genetic tests come back negitive i will keep going until we find out wich mutation it is. I am a runner and have always thought it was normal to have white flaky stuff appear on my skin after my sweat dries. Wow this sight is amazing and oddly enough I feel better. I am going to see my childrens pulmanologist this week and will have a sweat test myself. Thanks so much!!
Amy