Mom's intuition?

[hnorgren]

I am the mother of a wonderful 7 year old boy, who was born into this world with a tough first 6 months and a mother left with this "gut feeling" that there is something there beyond just some "breathing issues" after birth.
I will give as much of a brief run up to today as I can so those of you that have dealt with this for years can hopefully pass on some thoughts as to whether it is worth my pushing for further testing....my worries just keep gnawing away at me.
My little one's respiratory system issues began the moment he was born. The staff was short that night, so they put him into the bed for measuring etc. and actually had my husband "keep an eye" on him for the first 10 minutes or so. Dad noticed that our son just wasn't breathing right, hadn't cried, and his skin was starting to turn a darkish red....not a normal color. So the nurses wisked him off, and told us that his lungs were full and that they had to "pump his stomach" and that had helped him breathe easier. Well before we left the hospital, in only a day, our son's "stomach" had to be pumped 2 times due to a "back up" of thick mucous that was causing him problems breathing and digesting.
We just knew something was up, even once we got home, he wasn't eating, he was sleeping all the time, and in a couple of days of not passing his meconium since birth, he began to turn yellow! So off we went to the doc again, and they found that his bilirubin was way high, so we were sent home with the light blanket to get break up the bilirubin in his system and we had to get him to pass his bowels...which he had not yet in his life!
We finally did get everythig flowing, but his first 6 months of life were full of repiratory problems, in the hospital 1x for continued thick mucos issues which led to breathing problems.
Of course, I did not think of CF at that time and it wasn't until he had severe bouts of pneumonia 3 years in a row between ages 3-6, that I began wondering. He still has to take continued allergy medications, inhalers, and he has always had issues with passing his stools, getting backed up, etc.
I have mentioned it to the doctor, but she said she does not feel he has CF, but has not tested for it. Again, my intuition tells me otherwise, but I thought I would put it out there to see what those who deal with this all the time may think/know. I would appreciate any advice at this point, because I just don't want to not do something that could prevent complications in the future. Thank you so much!!

 

[hnorgren]

I am the mother of a wonderful 7 year old boy, who was born into this world with a tough first 6 months and a mother left with this "gut feeling" that there is something there beyond just some "breathing issues" after birth.
I will give as much of a brief run up to today as I can so those of you that have dealt with this for years can hopefully pass on some thoughts as to whether it is worth my pushing for further testing....my worries just keep gnawing away at me.
My little one's respiratory system issues began the moment he was born. The staff was short that night, so they put him into the bed for measuring etc. and actually had my husband "keep an eye" on him for the first 10 minutes or so. Dad noticed that our son just wasn't breathing right, hadn't cried, and his skin was starting to turn a darkish red....not a normal color. So the nurses wisked him off, and told us that his lungs were full and that they had to "pump his stomach" and that had helped him breathe easier. Well before we left the hospital, in only a day, our son's "stomach" had to be pumped 2 times due to a "back up" of thick mucous that was causing him problems breathing and digesting.
We just knew something was up, even once we got home, he wasn't eating, he was sleeping all the time, and in a couple of days of not passing his meconium since birth, he began to turn yellow! So off we went to the doc again, and they found that his bilirubin was way high, so we were sent home with the light blanket to get break up the bilirubin in his system and we had to get him to pass his bowels...which he had not yet in his life!
We finally did get everythig flowing, but his first 6 months of life were full of repiratory problems, in the hospital 1x for continued thick mucos issues which led to breathing problems.
Of course, I did not think of CF at that time and it wasn't until he had severe bouts of pneumonia 3 years in a row between ages 3-6, that I began wondering. He still has to take continued allergy medications, inhalers, and he has always had issues with passing his stools, getting backed up, etc.
I have mentioned it to the doctor, but she said she does not feel he has CF, but has not tested for it. Again, my intuition tells me otherwise, but I thought I would put it out there to see what those who deal with this all the time may think/know. I would appreciate any advice at this point, because I just don't want to not do something that could prevent complications in the future. Thank you so much!!

 

[hnorgren]

I am the mother of a wonderful 7 year old boy, who was born into this world with a tough first 6 months and a mother left with this "gut feeling" that there is something there beyond just some "breathing issues" after birth.
<br />I will give as much of a brief run up to today as I can so those of you that have dealt with this for years can hopefully pass on some thoughts as to whether it is worth my pushing for further testing....my worries just keep gnawing away at me.
<br />My little one's respiratory system issues began the moment he was born. The staff was short that night, so they put him into the bed for measuring etc. and actually had my husband "keep an eye" on him for the first 10 minutes or so. Dad noticed that our son just wasn't breathing right, hadn't cried, and his skin was starting to turn a darkish red....not a normal color. So the nurses wisked him off, and told us that his lungs were full and that they had to "pump his stomach" and that had helped him breathe easier. Well before we left the hospital, in only a day, our son's "stomach" had to be pumped 2 times due to a "back up" of thick mucous that was causing him problems breathing and digesting.
<br />We just knew something was up, even once we got home, he wasn't eating, he was sleeping all the time, and in a couple of days of not passing his meconium since birth, he began to turn yellow! So off we went to the doc again, and they found that his bilirubin was way high, so we were sent home with the light blanket to get break up the bilirubin in his system and we had to get him to pass his bowels...which he had not yet in his life!
<br />We finally did get everythig flowing, but his first 6 months of life were full of repiratory problems, in the hospital 1x for continued thick mucos issues which led to breathing problems.
<br />Of course, I did not think of CF at that time and it wasn't until he had severe bouts of pneumonia 3 years in a row between ages 3-6, that I began wondering. He still has to take continued allergy medications, inhalers, and he has always had issues with passing his stools, getting backed up, etc.
<br />I have mentioned it to the doctor, but she said she does not feel he has CF, but has not tested for it. Again, my intuition tells me otherwise, but I thought I would put it out there to see what those who deal with this all the time may think/know. I would appreciate any advice at this point, because I just don't want to not do something that could prevent complications in the future. Thank you so much!!

 

[Ratatosk]

I responded to your post under diagnosis. Basically push for further testing.

When our son was born, they thought he stooled in the womb and ended up suctioning a ton of green goo from him, monitored him overnight in the NICU, did xrays and told us he was fine. Several hours later he began to vomit and the determined he meconium illeus. Next day he had surgery to repair the intestinal blockage, etc.

Most people, most doctors aren't all that familiar with CF. A friend of mine's daughter was diagnosed at 18 months due to constipation issues. Otherwise the doctor attributed respiratory issues to RSV, which she caught as a baby. The doctor ran a test to "rule out CF" and apparently the sweat test results were off the charts.

 

[Ratatosk]

I responded to your post under diagnosis. Basically push for further testing.

When our son was born, they thought he stooled in the womb and ended up suctioning a ton of green goo from him, monitored him overnight in the NICU, did xrays and told us he was fine. Several hours later he began to vomit and the determined he meconium illeus. Next day he had surgery to repair the intestinal blockage, etc.

Most people, most doctors aren't all that familiar with CF. A friend of mine's daughter was diagnosed at 18 months due to constipation issues. Otherwise the doctor attributed respiratory issues to RSV, which she caught as a baby. The doctor ran a test to "rule out CF" and apparently the sweat test results were off the charts.

 

[Ratatosk]

I responded to your post under diagnosis. Basically push for further testing.
<br />
<br />When our son was born, they thought he stooled in the womb and ended up suctioning a ton of green goo from him, monitored him overnight in the NICU, did xrays and told us he was fine. Several hours later he began to vomit and the determined he meconium illeus. Next day he had surgery to repair the intestinal blockage, etc.
<br />
<br />Most people, most doctors aren't all that familiar with CF. A friend of mine's daughter was diagnosed at 18 months due to constipation issues. Otherwise the doctor attributed respiratory issues to RSV, which she caught as a baby. The doctor ran a test to "rule out CF" and apparently the sweat test results were off the charts.

 

[Mommafirst]

Your mom's intuition sounds dead on, imo. It really sounds like you have had a lot of medical folks drop the ball here. The hospital should have NEVER let a baby leave without passing meconium. Hospital's usually require keeping track of EVERY bowel movement and wet diaper to ensure all is okay.

If your doctor won't test him, when you insist, you should ask her(him) to write that they refused to test for CF and why and put it in his medical file. Then get your son to a new doctor that will listen. YOU live with him, you have to trust your instinct. The WORST thing that happens if you push is that you find nothing and are relieved, but feel silly.

 

[Mommafirst]

Your mom's intuition sounds dead on, imo. It really sounds like you have had a lot of medical folks drop the ball here. The hospital should have NEVER let a baby leave without passing meconium. Hospital's usually require keeping track of EVERY bowel movement and wet diaper to ensure all is okay.

If your doctor won't test him, when you insist, you should ask her(him) to write that they refused to test for CF and why and put it in his medical file. Then get your son to a new doctor that will listen. YOU live with him, you have to trust your instinct. The WORST thing that happens if you push is that you find nothing and are relieved, but feel silly.

 

[Mommafirst]

Your mom's intuition sounds dead on, imo. It really sounds like you have had a lot of medical folks drop the ball here. The hospital should have NEVER let a baby leave without passing meconium. Hospital's usually require keeping track of EVERY bowel movement and wet diaper to ensure all is okay.
<br />
<br />If your doctor won't test him, when you insist, you should ask her(him) to write that they refused to test for CF and why and put it in his medical file. Then get your son to a new doctor that will listen. YOU live with him, you have to trust your instinct. The WORST thing that happens if you push is that you find nothing and are relieved, but feel silly.

 

[ymikhale]

the symptoms you are describing warrant pushing for further testing. I hope he does not have CF, but if he does, starting treatments promptly will make a huge difference.

Get the most comprehensive genetic testing so that you can be sure.

In my experience trusting your intuition is a good thing, I do that all the time. Doctors certainly have more medical education then us,parents, but they don't know your child as well as you do. I go by the rule: if in doubt, it is better to get things checked out.

 

[ymikhale]

the symptoms you are describing warrant pushing for further testing. I hope he does not have CF, but if he does, starting treatments promptly will make a huge difference.

Get the most comprehensive genetic testing so that you can be sure.

In my experience trusting your intuition is a good thing, I do that all the time. Doctors certainly have more medical education then us,parents, but they don't know your child as well as you do. I go by the rule: if in doubt, it is better to get things checked out.

 

[ymikhale]

the symptoms you are describing warrant pushing for further testing. I hope he does not have CF, but if he does, starting treatments promptly will make a huge difference.
<br />
<br />Get the most comprehensive genetic testing so that you can be sure.
<br />
<br />In my experience trusting your intuition is a good thing, I do that all the time. Doctors certainly have more medical education then us,parents, but they don't know your child as well as you do. I go by the rule: if in doubt, it is better to get things checked out.