Help Me Please.

[Jadiebug]

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.

These are his diagnosed conditions:

Hypospadias

Larynogmalcia

Tracheomalcia

Sleep Apnea

GERD

Constant Stridor

Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.

Milk Allergy

Vesicoureteral Reflux

Macrocephaly

Failure To Thrive

Constant Constipation

He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.

He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.

He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.8 lbs and is 25 1/4 inches long.

I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. My nephew suffers from cystic fibrosis and I was wondering could this be what my baby has? He had a negative reading on the newborn screening. I am sorry this is so long but I just need an answer. When we get in to the new Pedi I am going to ask for the sweat test and/or blood tests...But until then I hoped maybe someone has had the same assortment of problems or some knowledge on my son's problems.

 

[Jadiebug]

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.

These are his diagnosed conditions:

Hypospadias

Larynogmalcia

Tracheomalcia

Sleep Apnea

GERD

Constant Stridor

Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.

Milk Allergy

Vesicoureteral Reflux

Macrocephaly

Failure To Thrive

Constant Constipation

He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.

He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.

He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.8 lbs and is 25 1/4 inches long.

I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. My nephew suffers from cystic fibrosis and I was wondering could this be what my baby has? He had a negative reading on the newborn screening. I am sorry this is so long but I just need an answer. When we get in to the new Pedi I am going to ask for the sweat test and/or blood tests...But until then I hoped maybe someone has had the same assortment of problems or some knowledge on my son's problems.

 

[Jadiebug]

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.

These are his diagnosed conditions:

Hypospadias

Larynogmalcia

Tracheomalcia

Sleep Apnea

GERD

Constant Stridor

Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.

Milk Allergy

Vesicoureteral Reflux

Macrocephaly

Failure To Thrive

Constant Constipation

He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.

He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.

He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.8 lbs and is 25 1/4 inches long.

I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. My nephew suffers from cystic fibrosis and I was wondering could this be what my baby has? He had a negative reading on the newborn screening. I am sorry this is so long but I just need an answer. When we get in to the new Pedi I am going to ask for the sweat test and/or blood tests...But until then I hoped maybe someone has had the same assortment of problems or some knowledge on my son's problems.

 

[Jadiebug]

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.

These are his diagnosed conditions:

Hypospadias

Larynogmalcia

Tracheomalcia

Sleep Apnea

GERD

Constant Stridor

Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.

Milk Allergy

Vesicoureteral Reflux

Macrocephaly

Failure To Thrive

Constant Constipation

He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.

He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.

He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.8 lbs and is 25 1/4 inches long.

I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. My nephew suffers from cystic fibrosis and I was wondering could this be what my baby has? He had a negative reading on the newborn screening. I am sorry this is so long but I just need an answer. When we get in to the new Pedi I am going to ask for the sweat test and/or blood tests...But until then I hoped maybe someone has had the same assortment of problems or some knowledge on my son's problems.

 

[Jadiebug]

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.
<br />
<br />These are his diagnosed conditions:
<br />
<br />Hypospadias
<br />
<br />Larynogmalcia
<br />
<br />Tracheomalcia
<br />
<br />Sleep Apnea
<br />
<br />GERD
<br />
<br />Constant Stridor
<br />
<br />Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.
<br />
<br />Milk Allergy
<br />
<br />Vesicoureteral Reflux
<br />
<br />Macrocephaly
<br />
<br />Failure To Thrive
<br />
<br />Constant Constipation
<br />
<br />He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.
<br />
<br />He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.
<br />
<br />He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.8 lbs and is 25 1/4 inches long.
<br />
<br />I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. My nephew suffers from cystic fibrosis and I was wondering could this be what my baby has? He had a negative reading on the newborn screening. I am sorry this is so long but I just need an answer. When we get in to the new Pedi I am going to ask for the sweat test and/or blood tests...But until then I hoped maybe someone has had the same assortment of problems or some knowledge on my son's problems.
<br />
<br />
<br />

 

[PlumPerfect]

its one of those things where there are some things tha point to yeas but others could or couldn't be and alot aren't exactly, yet every cf'er is different. lick him and see if he taste like salt, like a high salt, burn your lips.

 

[PlumPerfect]

its one of those things where there are some things tha point to yeas but others could or couldn't be and alot aren't exactly, yet every cf'er is different. lick him and see if he taste like salt, like a high salt, burn your lips.

 

[PlumPerfect]

its one of those things where there are some things tha point to yeas but others could or couldn't be and alot aren't exactly, yet every cf'er is different. lick him and see if he taste like salt, like a high salt, burn your lips.

 

[PlumPerfect]

its one of those things where there are some things tha point to yeas but others could or couldn't be and alot aren't exactly, yet every cf'er is different. lick him and see if he taste like salt, like a high salt, burn your lips.

 

[PlumPerfect]

its one of those things where there are some things tha point to yeas but others could or couldn't be and alot aren't exactly, yet every cf'er is different. lick him and see if he taste like salt, like a high salt, burn your lips.

 

[Buckeye]

Well my son has a lot of issues, but not those exact ones. When it all comes down to it, my son's problems all stem from being born prematurely except for the CF which is of course genetic. So it is possible to have a lot of issues going on with one kid.The vast majority of the items you described aren't CF symptoms. Failure to Thrive, GERD and constipation could be though. Since you have a family history of CF you should get him tested for CF so you can get that possible diagnosis cleared up and out of the way.As for all the other things, have you seen a Geneticist? There may be a syndrome that causes some of these problems, and I am 100% sure your local Pediatrician would have no idea if one existed. It is just way beyond their area of expertise.Have they ruled out his Macrocephaly as a cause of any of this? I have a friend who has a son with Microcephaly (opposite problem) and he has many issues that seem totally unrelated that are all caused by his smaller head/skull.Good luck on your quest for answers, seeing a new Pediatrician is a step in the right direction.

 

[Buckeye]

Well my son has a lot of issues, but not those exact ones. When it all comes down to it, my son's problems all stem from being born prematurely except for the CF which is of course genetic. So it is possible to have a lot of issues going on with one kid.The vast majority of the items you described aren't CF symptoms. Failure to Thrive, GERD and constipation could be though. Since you have a family history of CF you should get him tested for CF so you can get that possible diagnosis cleared up and out of the way.As for all the other things, have you seen a Geneticist? There may be a syndrome that causes some of these problems, and I am 100% sure your local Pediatrician would have no idea if one existed. It is just way beyond their area of expertise.Have they ruled out his Macrocephaly as a cause of any of this? I have a friend who has a son with Microcephaly (opposite problem) and he has many issues that seem totally unrelated that are all caused by his smaller head/skull.Good luck on your quest for answers, seeing a new Pediatrician is a step in the right direction.

 

[Buckeye]

Well my son has a lot of issues, but not those exact ones. When it all comes down to it, my son's problems all stem from being born prematurely except for the CF which is of course genetic. So it is possible to have a lot of issues going on with one kid.The vast majority of the items you described aren't CF symptoms. Failure to Thrive, GERD and constipation could be though. Since you have a family history of CF you should get him tested for CF so you can get that possible diagnosis cleared up and out of the way.As for all the other things, have you seen a Geneticist? There may be a syndrome that causes some of these problems, and I am 100% sure your local Pediatrician would have no idea if one existed. It is just way beyond their area of expertise.Have they ruled out his Macrocephaly as a cause of any of this? I have a friend who has a son with Microcephaly (opposite problem) and he has many issues that seem totally unrelated that are all caused by his smaller head/skull.Good luck on your quest for answers, seeing a new Pediatrician is a step in the right direction.

 

[Buckeye]

Well my son has a lot of issues, but not those exact ones. When it all comes down to it, my son's problems all stem from being born prematurely except for the CF which is of course genetic. So it is possible to have a lot of issues going on with one kid.The vast majority of the items you described aren't CF symptoms. Failure to Thrive, GERD and constipation could be though. Since you have a family history of CF you should get him tested for CF so you can get that possible diagnosis cleared up and out of the way.As for all the other things, have you seen a Geneticist? There may be a syndrome that causes some of these problems, and I am 100% sure your local Pediatrician would have no idea if one existed. It is just way beyond their area of expertise.Have they ruled out his Macrocephaly as a cause of any of this? I have a friend who has a son with Microcephaly (opposite problem) and he has many issues that seem totally unrelated that are all caused by his smaller head/skull.Good luck on your quest for answers, seeing a new Pediatrician is a step in the right direction.

 

[Buckeye]

Well my son has a lot of issues, but not those exact ones. When it all comes down to it, my son's problems all stem from being born prematurely except for the CF which is of course genetic. So it is possible to have a lot of issues going on with one kid.<p>The vast majority of the items you described aren't CF symptoms. Failure to Thrive, GERD and constipation could be though. Since you have a family history of CF you should get him tested for CF so you can get that possible diagnosis cleared up and out of the way.<p>As for all the other things, have you seen a Geneticist? There may be a syndrome that causes some of these problems, and I am 100% sure your local Pediatrician would have no idea if one existed. It is just way beyond their area of expertise.<p>Have they ruled out his Macrocephaly as a cause of any of this? I have a friend who has a son with Microcephaly (opposite problem) and he has many issues that seem totally unrelated that are all caused by his smaller head/skull.<p>Good luck on your quest for answers, seeing a new Pediatrician is a step in the right direction.