I agree with Allie. I am trying to get a diagnosis for my son. He has constant loose stools and has been hospitalized with dehydration. He has been in the 5th percentile in weight. His blood counts are low too. They have been running all sorts of tests on him, but I have to constantly stay on top of the doctors to make sure they are following up properly. His primary care physician is telling us one thing and the specialist is telling us another. They try their best, but they have so many other patients. The squeaky wheel does get the oil. I would always worry about the doctors getting upset with me for always calling them to find out what other tests they were going to do and what certain things meant, but I had to learn that my child's health is at stake. I don't care if I annoy the doctors with questions that is why I pay so much for insurance; to get the the medical attention we deserve. Your family will be in our prayers. It is so difficult to not know what is wrong.
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I agree with Allie. I am trying to get a diagnosis for my son. He has constant loose stools and has been hospitalized with dehydration. He has been in the 5th percentile in weight. His blood counts are low too. They have been running all sorts of tests on him, but I have to constantly stay on top of the doctors to make sure they are following up properly. His primary care physician is telling us one thing and the specialist is telling us another. They try their best, but they have so many other patients. The squeaky wheel does get the oil. I would always worry about the doctors getting upset with me for always calling them to find out what other tests they were going to do and what certain things meant, but I had to learn that my child's health is at stake. I don't care if I annoy the doctors with questions that is why I pay so much for insurance; to get the the medical attention we deserve. Your family will be in our prayers. It is so difficult to not know what is wrong.
I agree with Allie. I am trying to get a diagnosis for my son. He has constant loose stools and has been hospitalized with dehydration. He has been in the 5th percentile in weight. His blood counts are low too. They have been running all sorts of tests on him, but I have to constantly stay on top of the doctors to make sure they are following up properly. His primary care physician is telling us one thing and the specialist is telling us another. They try their best, but they have so many other patients. The squeaky wheel does get the oil. I would always worry about the doctors getting upset with me for always calling them to find out what other tests they were going to do and what certain things meant, but I had to learn that my child's health is at stake. I don't care if I annoy the doctors with questions that is why I pay so much for insurance; to get the the medical attention we deserve. Your family will be in our prayers. It is so difficult to not know what is wrong.
I agree with Allie. I am trying to get a diagnosis for my son. He has constant loose stools and has been hospitalized with dehydration. He has been in the 5th percentile in weight. His blood counts are low too. They have been running all sorts of tests on him, but I have to constantly stay on top of the doctors to make sure they are following up properly. His primary care physician is telling us one thing and the specialist is telling us another. They try their best, but they have so many other patients. The squeaky wheel does get the oil. I would always worry about the doctors getting upset with me for always calling them to find out what other tests they were going to do and what certain things meant, but I had to learn that my child's health is at stake. I don't care if I annoy the doctors with questions that is why I pay so much for insurance; to get the the medical attention we deserve. Your family will be in our prayers. It is so difficult to not know what is wrong.
I agree with Allie. I am trying to get a diagnosis for my son. He has constant loose stools and has been hospitalized with dehydration. He has been in the 5th percentile in weight. His blood counts are low too. They have been running all sorts of tests on him, but I have to constantly stay on top of the doctors to make sure they are following up properly. His primary care physician is telling us one thing and the specialist is telling us another. They try their best, but they have so many other patients. The squeaky wheel does get the oil. I would always worry about the doctors getting upset with me for always calling them to find out what other tests they were going to do and what certain things meant, but I had to learn that my child's health is at stake. I don't care if I annoy the doctors with questions that is why I pay so much for insurance; to get the the medical attention we deserve. Your family will be in our prayers. It is so difficult to not know what is wrong.
concernedmom
New member
The allergist may be willing to test. FWIW, that's who ordered the test for my DS (because of chronic sinusitis & asthma.)
concernedmom
New member
The allergist may be willing to test. FWIW, that's who ordered the test for my DS (because of chronic sinusitis & asthma.)
concernedmom
New member
The allergist may be willing to test. FWIW, that's who ordered the test for my DS (because of chronic sinusitis & asthma.)
concernedmom
New member
The allergist may be willing to test. FWIW, that's who ordered the test for my DS (because of chronic sinusitis & asthma.)
concernedmom
New member
The allergist may be willing to test. FWIW, that's who ordered the test for my DS (because of chronic sinusitis & asthma.)
Tiffani, my son was in the 75th percentile, and he was a chubby little guy. We were sent to allergists, ear, nose & throat spec., etc. NONE of Jordan's symptoms were what doctors usually see when CF is obvious. The fact is that CF isn't always obvious. That is WHY we have adults being diagnosed. Jordan wasn't dx until he was 15 years old. I strongly urge you to find a doctor who will listen to you, and get the full-panel genetic test done. Don't let that doc tell you it can't be CF until you have tested for every single known mutation.
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
Tiffani, my son was in the 75th percentile, and he was a chubby little guy. We were sent to allergists, ear, nose & throat spec., etc. NONE of Jordan's symptoms were what doctors usually see when CF is obvious. The fact is that CF isn't always obvious. That is WHY we have adults being diagnosed. Jordan wasn't dx until he was 15 years old. I strongly urge you to find a doctor who will listen to you, and get the full-panel genetic test done. Don't let that doc tell you it can't be CF until you have tested for every single known mutation.
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
Tiffani, my son was in the 75th percentile, and he was a chubby little guy. We were sent to allergists, ear, nose & throat spec., etc. NONE of Jordan's symptoms were what doctors usually see when CF is obvious. The fact is that CF isn't always obvious. That is WHY we have adults being diagnosed. Jordan wasn't dx until he was 15 years old. I strongly urge you to find a doctor who will listen to you, and get the full-panel genetic test done. Don't let that doc tell you it can't be CF until you have tested for every single known mutation.
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
Tiffani, my son was in the 75th percentile, and he was a chubby little guy. We were sent to allergists, ear, nose & throat spec., etc. NONE of Jordan's symptoms were what doctors usually see when CF is obvious. The fact is that CF isn't always obvious. That is WHY we have adults being diagnosed. Jordan wasn't dx until he was 15 years old. I strongly urge you to find a doctor who will listen to you, and get the full-panel genetic test done. Don't let that doc tell you it can't be CF until you have tested for every single known mutation.
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
Stacey
Tiffani, my son was in the 75th percentile, and he was a chubby little guy. We were sent to allergists, ear, nose & throat spec., etc. NONE of Jordan's symptoms were what doctors usually see when CF is obvious. The fact is that CF isn't always obvious. That is WHY we have adults being diagnosed. Jordan wasn't dx until he was 15 years old. I strongly urge you to find a doctor who will listen to you, and get the full-panel genetic test done. Don't let that doc tell you it can't be CF until you have tested for every single known mutation.
<br />
<br />I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
<br />
<br />Stacey
<br />
<br />I know this is hard, and I'm sorry you have to go through it. Hang in there and keep pushing.
<br />
<br />Stacey
ontariomom
New member
Hi I would like to share my daughter's experience with you.She was diagnosed with cf at 11 months old.During her first year she always had very messy bowel movements that were diarrhea like,not quite solid but not totally liquid either and she would go 4 or 5 times in an hour.She reached 20lbs and was not getting bigger.I took her to many doctors and collected many stool samples and nothing was coming back wrong.Finally a doctor suggested the sweat test and it came back positive.After her diagnosis she was started on enzymes and she began to grow.I had no idea she could have cf as her father and I had no history of it.Today she is 9 years old and the same size as others her age.I believe my daughter has the digestive form of cf as she has not had any serious lung infections.She was hospitalized once at 6months for bronchiolitis and at that time they still did not know if she had cf. She has had dna testing done and only one of the genes causing the cf could be identified.It was only through the sweat test that we got the diagnosis.I would ask your doctor for that test.I hope your son does not have it.But I would definitely ask for a sweat test.Good luck!
ontariomom
New member
Hi I would like to share my daughter's experience with you.She was diagnosed with cf at 11 months old.During her first year she always had very messy bowel movements that were diarrhea like,not quite solid but not totally liquid either and she would go 4 or 5 times in an hour.She reached 20lbs and was not getting bigger.I took her to many doctors and collected many stool samples and nothing was coming back wrong.Finally a doctor suggested the sweat test and it came back positive.After her diagnosis she was started on enzymes and she began to grow.I had no idea she could have cf as her father and I had no history of it.Today she is 9 years old and the same size as others her age.I believe my daughter has the digestive form of cf as she has not had any serious lung infections.She was hospitalized once at 6months for bronchiolitis and at that time they still did not know if she had cf. She has had dna testing done and only one of the genes causing the cf could be identified.It was only through the sweat test that we got the diagnosis.I would ask your doctor for that test.I hope your son does not have it.But I would definitely ask for a sweat test.Good luck!
ontariomom
New member
Hi I would like to share my daughter's experience with you.She was diagnosed with cf at 11 months old.During her first year she always had very messy bowel movements that were diarrhea like,not quite solid but not totally liquid either and she would go 4 or 5 times in an hour.She reached 20lbs and was not getting bigger.I took her to many doctors and collected many stool samples and nothing was coming back wrong.Finally a doctor suggested the sweat test and it came back positive.After her diagnosis she was started on enzymes and she began to grow.I had no idea she could have cf as her father and I had no history of it.Today she is 9 years old and the same size as others her age.I believe my daughter has the digestive form of cf as she has not had any serious lung infections.She was hospitalized once at 6months for bronchiolitis and at that time they still did not know if she had cf. She has had dna testing done and only one of the genes causing the cf could be identified.It was only through the sweat test that we got the diagnosis.I would ask your doctor for that test.I hope your son does not have it.But I would definitely ask for a sweat test.Good luck!
ontariomom
New member
Hi I would like to share my daughter's experience with you.She was diagnosed with cf at 11 months old.During her first year she always had very messy bowel movements that were diarrhea like,not quite solid but not totally liquid either and she would go 4 or 5 times in an hour.She reached 20lbs and was not getting bigger.I took her to many doctors and collected many stool samples and nothing was coming back wrong.Finally a doctor suggested the sweat test and it came back positive.After her diagnosis she was started on enzymes and she began to grow.I had no idea she could have cf as her father and I had no history of it.Today she is 9 years old and the same size as others her age.I believe my daughter has the digestive form of cf as she has not had any serious lung infections.She was hospitalized once at 6months for bronchiolitis and at that time they still did not know if she had cf. She has had dna testing done and only one of the genes causing the cf could be identified.It was only through the sweat test that we got the diagnosis.I would ask your doctor for that test.I hope your son does not have it.But I would definitely ask for a sweat test.Good luck!
ontariomom
New member
Hi I would like to share my daughter's experience with you.She was diagnosed with cf at 11 months old.During her first year she always had very messy bowel movements that were diarrhea like,not quite solid but not totally liquid either and she would go 4 or 5 times in an hour.She reached 20lbs and was not getting bigger.I took her to many doctors and collected many stool samples and nothing was coming back wrong.Finally a doctor suggested the sweat test and it came back positive.After her diagnosis she was started on enzymes and she began to grow.I had no idea she could have cf as her father and I had no history of it.Today she is 9 years old and the same size as others her age.I believe my daughter has the digestive form of cf as she has not had any serious lung infections.She was hospitalized once at 6months for bronchiolitis and at that time they still did not know if she had cf. She has had dna testing done and only one of the genes causing the cf could be identified.It was only through the sweat test that we got the diagnosis.I would ask your doctor for that test.I hope your son does not have it.But I would definitely ask for a sweat test.Good luck!