3 week old just diagnosed

hopefulmommy · Oct 4, 2007

Wow, these past few weeks have been a whirlwind. Our first newborn screen came back high for CF, I was reassured by our pediatrician that there was a 90% false positive rate, we repeated it and it came back high again. So we were scheduled for a sweat test on Monday - it came back 96, much to our suprise. They drew some baseline labs and his karyotype. Next week we'll do an x-ray and more teaching.

Our son was born at 8 1/2 lbs and had gained 2 pounds already - I really didn't think it would come back positive.

Now looking back, I can see the symptoms, things that I had just chalked up to him being a different baby. The gassiness, multiple stools, smelly poops....

So, I guess I'm just here, looking for support and information.

I have my own beliefs about medicine, so I'm having trouble grasping some things that the docs want me to do (such as giving him applesauce with his enzymes at 3 weeks old - gosh, this just doesn't seem right to me - I'm breastfeeding and believe that this is all he should receive right now)

I'm also against many vaccines, etc....

I'm just trying to find a balance between what I believe and what the docs are telling me.

Thanks for being here and being so welcoming!

hopefulmommy · Oct 4, 2007

Wow, these past few weeks have been a whirlwind. Our first newborn screen came back high for CF, I was reassured by our pediatrician that there was a 90% false positive rate, we repeated it and it came back high again. So we were scheduled for a sweat test on Monday - it came back 96, much to our suprise. They drew some baseline labs and his karyotype. Next week we'll do an x-ray and more teaching.

Our son was born at 8 1/2 lbs and had gained 2 pounds already - I really didn't think it would come back positive.

Now looking back, I can see the symptoms, things that I had just chalked up to him being a different baby. The gassiness, multiple stools, smelly poops....

So, I guess I'm just here, looking for support and information.

I have my own beliefs about medicine, so I'm having trouble grasping some things that the docs want me to do (such as giving him applesauce with his enzymes at 3 weeks old - gosh, this just doesn't seem right to me - I'm breastfeeding and believe that this is all he should receive right now)

I'm also against many vaccines, etc....

I'm just trying to find a balance between what I believe and what the docs are telling me.

Thanks for being here and being so welcoming!

hopefulmommy · Oct 4, 2007

Wow, these past few weeks have been a whirlwind. Our first newborn screen came back high for CF, I was reassured by our pediatrician that there was a 90% false positive rate, we repeated it and it came back high again. So we were scheduled for a sweat test on Monday - it came back 96, much to our suprise. They drew some baseline labs and his karyotype. Next week we'll do an x-ray and more teaching.

Our son was born at 8 1/2 lbs and had gained 2 pounds already - I really didn't think it would come back positive.

Now looking back, I can see the symptoms, things that I had just chalked up to him being a different baby. The gassiness, multiple stools, smelly poops....

So, I guess I'm just here, looking for support and information.

I have my own beliefs about medicine, so I'm having trouble grasping some things that the docs want me to do (such as giving him applesauce with his enzymes at 3 weeks old - gosh, this just doesn't seem right to me - I'm breastfeeding and believe that this is all he should receive right now)

I'm also against many vaccines, etc....

I'm just trying to find a balance between what I believe and what the docs are telling me.

Thanks for being here and being so welcoming!

hopefulmommy · Oct 4, 2007

Wow, these past few weeks have been a whirlwind. Our first newborn screen came back high for CF, I was reassured by our pediatrician that there was a 90% false positive rate, we repeated it and it came back high again. So we were scheduled for a sweat test on Monday - it came back 96, much to our suprise. They drew some baseline labs and his karyotype. Next week we'll do an x-ray and more teaching.

Our son was born at 8 1/2 lbs and had gained 2 pounds already - I really didn't think it would come back positive.

Now looking back, I can see the symptoms, things that I had just chalked up to him being a different baby. The gassiness, multiple stools, smelly poops....

So, I guess I'm just here, looking for support and information.

I have my own beliefs about medicine, so I'm having trouble grasping some things that the docs want me to do (such as giving him applesauce with his enzymes at 3 weeks old - gosh, this just doesn't seem right to me - I'm breastfeeding and believe that this is all he should receive right now)

I'm also against many vaccines, etc....

I'm just trying to find a balance between what I believe and what the docs are telling me.

Thanks for being here and being so welcoming!

hopefulmommy · Oct 4, 2007

Wow, these past few weeks have been a whirlwind. Our first newborn screen came back high for CF, I was reassured by our pediatrician that there was a 90% false positive rate, we repeated it and it came back high again. So we were scheduled for a sweat test on Monday - it came back 96, much to our suprise. They drew some baseline labs and his karyotype. Next week we'll do an x-ray and more teaching.

Our son was born at 8 1/2 lbs and had gained 2 pounds already - I really didn't think it would come back positive.

Now looking back, I can see the symptoms, things that I had just chalked up to him being a different baby. The gassiness, multiple stools, smelly poops....

So, I guess I'm just here, looking for support and information.

I have my own beliefs about medicine, so I'm having trouble grasping some things that the docs want me to do (such as giving him applesauce with his enzymes at 3 weeks old - gosh, this just doesn't seem right to me - I'm breastfeeding and believe that this is all he should receive right now)

I'm also against many vaccines, etc....

I'm just trying to find a balance between what I believe and what the docs are telling me.

Thanks for being here and being so welcoming!

Ratatosk · Oct 4, 2007

He needs the enzymes so he can digest his food (breast milk). If he doesn't get the enzymes he won't get the nutrition and fats he needs that are necessary for growth and proper brain development. And sometimes not having enzymes can lead to failure to thrive, bowel obstruction....

I know there are some moms who BF and either just popped the enzyme beads into the babies mouth using a moistened finger. I used baby food bananas -- just a small enough amount to get the enzymes to stick to the spoon and get them into DS' mouth.

Ratatosk · Oct 4, 2007

He needs the enzymes so he can digest his food (breast milk). If he doesn't get the enzymes he won't get the nutrition and fats he needs that are necessary for growth and proper brain development. And sometimes not having enzymes can lead to failure to thrive, bowel obstruction....

I know there are some moms who BF and either just popped the enzyme beads into the babies mouth using a moistened finger. I used baby food bananas -- just a small enough amount to get the enzymes to stick to the spoon and get them into DS' mouth.

Ratatosk · Oct 4, 2007

He needs the enzymes so he can digest his food (breast milk). If he doesn't get the enzymes he won't get the nutrition and fats he needs that are necessary for growth and proper brain development. And sometimes not having enzymes can lead to failure to thrive, bowel obstruction....

I know there are some moms who BF and either just popped the enzyme beads into the babies mouth using a moistened finger. I used baby food bananas -- just a small enough amount to get the enzymes to stick to the spoon and get them into DS' mouth.

Ratatosk · Oct 4, 2007

He needs the enzymes so he can digest his food (breast milk). If he doesn't get the enzymes he won't get the nutrition and fats he needs that are necessary for growth and proper brain development. And sometimes not having enzymes can lead to failure to thrive, bowel obstruction....

I know there are some moms who BF and either just popped the enzyme beads into the babies mouth using a moistened finger. I used baby food bananas -- just a small enough amount to get the enzymes to stick to the spoon and get them into DS' mouth.

Ratatosk · Oct 4, 2007

He needs the enzymes so he can digest his food (breast milk). If he doesn't get the enzymes he won't get the nutrition and fats he needs that are necessary for growth and proper brain development. And sometimes not having enzymes can lead to failure to thrive, bowel obstruction....

I know there are some moms who BF and either just popped the enzyme beads into the babies mouth using a moistened finger. I used baby food bananas -- just a small enough amount to get the enzymes to stick to the spoon and get them into DS' mouth.

fsuapril · Oct 4, 2007

from everything i have read the reason they want the applesauce is that the acidic nature of the applesauce will help preserve the enzyme until it get through childs stomach...the stomach acids will start disolving...and they really want the enzyme to make it to the small intestine before it starts to break down..thats where the natural enzyme would break down the childs foods...

I only give my son a tiny bit, just enough to get the enzymes on the spoon and down. My son doesnt like applesauce so we use baby peaches..

I can understand how this may conflict with some of your personal thoughts as far as vaccines and stuff, but the doctors are going to want kids with CF to get them to try any and every way to keep them from getting illnesses that could land children with CF in the hospital that would not normally put a child without CF in.

As a parent choices we make are hard enough, and as a parent of a child with CF choices can be even harder..

fsuapril · Oct 4, 2007

from everything i have read the reason they want the applesauce is that the acidic nature of the applesauce will help preserve the enzyme until it get through childs stomach...the stomach acids will start disolving...and they really want the enzyme to make it to the small intestine before it starts to break down..thats where the natural enzyme would break down the childs foods...

I only give my son a tiny bit, just enough to get the enzymes on the spoon and down. My son doesnt like applesauce so we use baby peaches..

I can understand how this may conflict with some of your personal thoughts as far as vaccines and stuff, but the doctors are going to want kids with CF to get them to try any and every way to keep them from getting illnesses that could land children with CF in the hospital that would not normally put a child without CF in.

As a parent choices we make are hard enough, and as a parent of a child with CF choices can be even harder..

fsuapril · Oct 4, 2007

from everything i have read the reason they want the applesauce is that the acidic nature of the applesauce will help preserve the enzyme until it get through childs stomach...the stomach acids will start disolving...and they really want the enzyme to make it to the small intestine before it starts to break down..thats where the natural enzyme would break down the childs foods...

I only give my son a tiny bit, just enough to get the enzymes on the spoon and down. My son doesnt like applesauce so we use baby peaches..

I can understand how this may conflict with some of your personal thoughts as far as vaccines and stuff, but the doctors are going to want kids with CF to get them to try any and every way to keep them from getting illnesses that could land children with CF in the hospital that would not normally put a child without CF in.

As a parent choices we make are hard enough, and as a parent of a child with CF choices can be even harder..

fsuapril · Oct 4, 2007

from everything i have read the reason they want the applesauce is that the acidic nature of the applesauce will help preserve the enzyme until it get through childs stomach...the stomach acids will start disolving...and they really want the enzyme to make it to the small intestine before it starts to break down..thats where the natural enzyme would break down the childs foods...

I only give my son a tiny bit, just enough to get the enzymes on the spoon and down. My son doesnt like applesauce so we use baby peaches..

I can understand how this may conflict with some of your personal thoughts as far as vaccines and stuff, but the doctors are going to want kids with CF to get them to try any and every way to keep them from getting illnesses that could land children with CF in the hospital that would not normally put a child without CF in.

As a parent choices we make are hard enough, and as a parent of a child with CF choices can be even harder..

fsuapril · Oct 4, 2007

from everything i have read the reason they want the applesauce is that the acidic nature of the applesauce will help preserve the enzyme until it get through childs stomach...the stomach acids will start disolving...and they really want the enzyme to make it to the small intestine before it starts to break down..thats where the natural enzyme would break down the childs foods...

I only give my son a tiny bit, just enough to get the enzymes on the spoon and down. My son doesnt like applesauce so we use baby peaches..

I can understand how this may conflict with some of your personal thoughts as far as vaccines and stuff, but the doctors are going to want kids with CF to get them to try any and every way to keep them from getting illnesses that could land children with CF in the hospital that would not normally put a child without CF in.

As a parent choices we make are hard enough, and as a parent of a child with CF choices can be even harder..

hopefulmommy · Oct 4, 2007