Diagnosing my 8 month old...x-posted in young adults

[Joddog]

I posted this in Young Adults but was told to post here as well, because it gets more traffic...

I have a question about my 8 month old daughter--she was born at 27 weeks gestation--which makes her 5 months corrected age. The doctors are concerned about her because she currently only weighs 10 lbs 9 oz. At our last NICU follow up appt, they told us to look out for *abnormal* stools...and this may seem like a silly question, but what does it LOOK like...they keep telling me, and I keep reading, bulky, greasy, smelly stools. Okay, I need more of a visual picture... and if it isn't TMI, I'll say what her diapers look like! LOL! They are dark in color, and have an almost *stringy* like consistency. They stink...but we are also feeding her more baby food than before, and I don't know if that is attributing to it.She is not gaining well at all, but she did fine at first. She has reflux and is on Zantac 3x a day. She does pass A LOT of gas and she also has what I describe as *bubbles* in her belly--audible and painful sounding bubbles.

We are going to have her tested February 17th. We are really concerned about this. We went through many years of infertility to have her, then she was 13 weeks early, spent the first 7 weeks of her life in the NICU...and now this...

Thanks in advance...and if this isn't in the right place, I apologize.

Jodi

 

[Joddog]

I posted this in Young Adults but was told to post here as well, because it gets more traffic...

I have a question about my 8 month old daughter--she was born at 27 weeks gestation--which makes her 5 months corrected age. The doctors are concerned about her because she currently only weighs 10 lbs 9 oz. At our last NICU follow up appt, they told us to look out for *abnormal* stools...and this may seem like a silly question, but what does it LOOK like...they keep telling me, and I keep reading, bulky, greasy, smelly stools. Okay, I need more of a visual picture... and if it isn't TMI, I'll say what her diapers look like! LOL! They are dark in color, and have an almost *stringy* like consistency. They stink...but we are also feeding her more baby food than before, and I don't know if that is attributing to it.She is not gaining well at all, but she did fine at first. She has reflux and is on Zantac 3x a day. She does pass A LOT of gas and she also has what I describe as *bubbles* in her belly--audible and painful sounding bubbles.

We are going to have her tested February 17th. We are really concerned about this. We went through many years of infertility to have her, then she was 13 weeks early, spent the first 7 weeks of her life in the NICU...and now this...

Thanks in advance...and if this isn't in the right place, I apologize.

Jodi

 

[JazzysMom]

Abnormal would be very greasy/oily. The best way to describe is the orangy film left by spaghetti sauce. The the color might not be the same since her diet is limited at this point. If it appears that "things" are digesting completely making her poop seem "bulky", "clumpy" etc. I am not sure how else to describe a babys stool in a CF way that wont seem like a normal baby poop. Consistantly loose & STINKY, STINKY & gassy poops. All of this is signs of malabsorbtion associated with CF. If U need further info please yell!

 

[JazzysMom]

Abnormal would be very greasy/oily. The best way to describe is the orangy film left by spaghetti sauce. The the color might not be the same since her diet is limited at this point. If it appears that "things" are digesting completely making her poop seem "bulky", "clumpy" etc. I am not sure how else to describe a babys stool in a CF way that wont seem like a normal baby poop. Consistantly loose & STINKY, STINKY & gassy poops. All of this is signs of malabsorbtion associated with CF. If U need further info please yell!

 

[Tessalonikki]

Hi Jodi,
I am sorry that you are having such a difficult time at the very start of her life. I understand and know the feeling when you are in and out of the NICU. Both of my kids have CF. My son was diagnosed right at birth and it was confirmed a few weeks later when the genetic tests came back. My daughter was diagnosed while I was pregnant.
The stools of my kids are pretty normal looking, but they do smell foul. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was also told to look for grease... (you would notice it in the diaper area if there was a "rim" around the stool - like a grease spot). In my son I noticed what you called the "stringy type almost slick, but for him it is mucus he swallowed and then passed. I also watch out for very loose, watery stools. Color is not dark but more greenish yellow -
I hope this helps a little.

Now I might be speaking out of school here, but in Germany(where I was born and raised) Babies with CF are also called Salt babies and one indicater before you get all tests back is that when you lick your childs skin and it tastes really salty (I mean everywhere) then you might have an indication that something could be wrong.
In our case this was true. Both of my kids are very salty. And when I figured it out on my son, I guess I wasn't too shocked anymore when the results came back positive.
And once they were put on the enzymes for digestion they did great.


Good luck to you and even if you get a positive result back don't be too scared. Enjoy your little girl - there are great treatments and resources available, especially here in the US. I am also really happy to have found this site. There is a lot of great information here.

All the best to you and your family
Tanja Mom of Nicky3w/cf and Tessa 14 months w/cf)

<blockquote>Quote<br><hr><i>Originally posted by: <b>Joddog</b></i><br>I posted this in Young Adults but was told to post here as well, because it gets more traffic...



I have a question about my 8 month old daughter--she was born at 27 weeks gestation--which makes her 5 months corrected age. The doctors are concerned about her because she currently only weighs 10 lbs 9 oz. At our last NICU follow up appt, they told us to look out for *abnormal* stools...and this may seem like a silly question, but what does it LOOK like...they keep telling me, and I keep reading, bulky, greasy, smelly stools. Okay, I need more of a visual picture... and if it isn't TMI, I'll say what her diapers look like! LOL! They are dark in color, and have an almost *stringy* like consistency. They stink...but we are also feeding her more baby food than before, and I don't know if that is attributing to it.She is not gaining well at all, but she did fine at first. She has reflux and is on Zantac 3x a day. She does pass A LOT of gas and she also has what I describe as *bubbles* in her belly--audible and painful sounding bubbles.



We are going to have her tested February 17th. We are really concerned about this. We went through many years of infertility to have her, then she was 13 weeks early, spent the first 7 weeks of her life in the NICU...and now this...



Thanks in advance...and if this isn't in the right place, I apologize.



Jodi<hr></blockquote>

 

[Tessalonikki]

Hi Jodi,
I am sorry that you are having such a difficult time at the very start of her life. I understand and know the feeling when you are in and out of the NICU. Both of my kids have CF. My son was diagnosed right at birth and it was confirmed a few weeks later when the genetic tests came back. My daughter was diagnosed while I was pregnant.
The stools of my kids are pretty normal looking, but they do smell foul. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was also told to look for grease... (you would notice it in the diaper area if there was a "rim" around the stool - like a grease spot). In my son I noticed what you called the "stringy type almost slick, but for him it is mucus he swallowed and then passed. I also watch out for very loose, watery stools. Color is not dark but more greenish yellow -
I hope this helps a little.

Now I might be speaking out of school here, but in Germany(where I was born and raised) Babies with CF are also called Salt babies and one indicater before you get all tests back is that when you lick your childs skin and it tastes really salty (I mean everywhere) then you might have an indication that something could be wrong.
In our case this was true. Both of my kids are very salty. And when I figured it out on my son, I guess I wasn't too shocked anymore when the results came back positive.
And once they were put on the enzymes for digestion they did great.


Good luck to you and even if you get a positive result back don't be too scared. Enjoy your little girl - there are great treatments and resources available, especially here in the US. I am also really happy to have found this site. There is a lot of great information here.

All the best to you and your family
Tanja Mom of Nicky3w/cf and Tessa 14 months w/cf)

<blockquote>Quote<br><hr><i>Originally posted by: <b>Joddog</b></i><br>I posted this in Young Adults but was told to post here as well, because it gets more traffic...



I have a question about my 8 month old daughter--she was born at 27 weeks gestation--which makes her 5 months corrected age. The doctors are concerned about her because she currently only weighs 10 lbs 9 oz. At our last NICU follow up appt, they told us to look out for *abnormal* stools...and this may seem like a silly question, but what does it LOOK like...they keep telling me, and I keep reading, bulky, greasy, smelly stools. Okay, I need more of a visual picture... and if it isn't TMI, I'll say what her diapers look like! LOL! They are dark in color, and have an almost *stringy* like consistency. They stink...but we are also feeding her more baby food than before, and I don't know if that is attributing to it.She is not gaining well at all, but she did fine at first. She has reflux and is on Zantac 3x a day. She does pass A LOT of gas and she also has what I describe as *bubbles* in her belly--audible and painful sounding bubbles.



We are going to have her tested February 17th. We are really concerned about this. We went through many years of infertility to have her, then she was 13 weeks early, spent the first 7 weeks of her life in the NICU...and now this...



Thanks in advance...and if this isn't in the right place, I apologize.



Jodi<hr></blockquote>

 

[julie]

Jodi, this is a perfect place to post your questions, welcome!

I can't really advise what the poops look like because I am married to someone with CF, not a parent to one.

I sure can understand and appreciate your struggle with infertility though! My husband has an absence of the vas deferens so we had a sperm retrieval and are doing IVF with ICSI. I actually just had my retrieval today. Can I be nosey and ask if yours was male factor infertility? You can email if you are more comfortable with that, <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>. I also ask because if there is a male factor infertility, it is likely that your child may (not for sure, but may) have CF because 99% of the time; male factor infertility if there is absence of sperm in ejaculation indicates CF or a CF carrier.

Are you having a sweat test or a blood test? Either are "good", both have their downfalls... Sweat test is sometimes inaccurate on young children and some people test negative FOREVER and hen have a blood test (because of the symptoms) and DO have CF.

Do you understand how the CF "pass-down" from mom and dad to baby works? I don't mean to insult your intelligence, but sometimes it can get confusing. Both parents have to be a carrier for the baby to have CF. I have a "table" of information on my website <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/Where_to_begin.html">http://www.cysticfibrosismaleinfertility.com/Where_to_begin.html</a> (scroll down just a bit) that makes it a tad easier sometimes.

If you have more questions, were here to help you!

 

[julie]

Jodi, this is a perfect place to post your questions, welcome!

I can't really advise what the poops look like because I am married to someone with CF, not a parent to one.

I sure can understand and appreciate your struggle with infertility though! My husband has an absence of the vas deferens so we had a sperm retrieval and are doing IVF with ICSI. I actually just had my retrieval today. Can I be nosey and ask if yours was male factor infertility? You can email if you are more comfortable with that, <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>. I also ask because if there is a male factor infertility, it is likely that your child may (not for sure, but may) have CF because 99% of the time; male factor infertility if there is absence of sperm in ejaculation indicates CF or a CF carrier.

Are you having a sweat test or a blood test? Either are "good", both have their downfalls... Sweat test is sometimes inaccurate on young children and some people test negative FOREVER and hen have a blood test (because of the symptoms) and DO have CF.

Do you understand how the CF "pass-down" from mom and dad to baby works? I don't mean to insult your intelligence, but sometimes it can get confusing. Both parents have to be a carrier for the baby to have CF. I have a "table" of information on my website <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/Where_to_begin.html">http://www.cysticfibrosismaleinfertility.com/Where_to_begin.html</a> (scroll down just a bit) that makes it a tad easier sometimes.

If you have more questions, were here to help you!

 

[Joddog]

Our IF was all me. I have PCOS, one blocked tube, annovulation, and no periods without being medically induced.

We are having the sweat test done on the 17th of this month. I have to say that I am looking forward to it because either she will or will not have it, and I can adjust. This whole not knowing thing is tearing me up! I have had 2 panic attacks today alone...

Thanks everyone...I just feel like this is what is going on...and I pray that it isn't! I am sincerely hoping that this is in my mind because the dr brought it up as a possibility. If not, I will definitely be back here for support on a regular basis. You all seem to be friendly helpful people...

Jodi

 

[Joddog]

Our IF was all me. I have PCOS, one blocked tube, annovulation, and no periods without being medically induced.

We are having the sweat test done on the 17th of this month. I have to say that I am looking forward to it because either she will or will not have it, and I can adjust. This whole not knowing thing is tearing me up! I have had 2 panic attacks today alone...

Thanks everyone...I just feel like this is what is going on...and I pray that it isn't! I am sincerely hoping that this is in my mind because the dr brought it up as a possibility. If not, I will definitely be back here for support on a regular basis. You all seem to be friendly helpful people...

Jodi

 

[Haileysmommy]

Hailey's stools are kind of weird. Her poop has black stuff in it that looks almost like spinach. The dr's said they have never heard of that before. They also smell like a dead animal sometimes and like vinegar others. She is different when it comes to that stuff though. When I see the "spinach" I know it is time to increase the enzymes.
I don't really know what her stools looked like before diagnosis since she was diagnosed at 2 weeks.

 

[Haileysmommy]

Hailey's stools are kind of weird. Her poop has black stuff in it that looks almost like spinach. The dr's said they have never heard of that before. They also smell like a dead animal sometimes and like vinegar others. She is different when it comes to that stuff though. When I see the "spinach" I know it is time to increase the enzymes.
I don't really know what her stools looked like before diagnosis since she was diagnosed at 2 weeks.

 

[anonymous]

Hi Jodi and welcome! I have a 2 1/2 year old son with CF (that I diagnosed). Before he was diagnosed (and a few times after) I have noticed stringy stuff (which I THINK is mucus). Not to say this is the same thing that you are seeing. I belong to another group (CF Infants and toddlers) and we actually have pictures posted on the site (of bowel movements). Yes, gross, but, with CF, you get used to it <img src="i/expressions/face-icon-small-blush.gif" border="0">) I pray and hope your daughter does not have CF, but please know that if it is and once she starts meds, it will be sooooo much better. My son went from the 10th percentile (before diagnosis) to over the 90th percentile (after diagnosis)!

Email me if you have any questions (curecfnow@aol.com) and the website is <a target=new class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/CF_Infants_Toddlers/
">http://health.groups.yahoo.com/group/CF_Infants_Toddlers/
</a>
Also, my son's website is www.fightforethan.com

Hang in there! You ARE right...not knowing is the WORST! Take care and keep us updated!

Much love,
Amanda
Mommy to Kenzie (5, cf carrier) and Ethan (2, wcf)<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Hi Jodi and welcome! I have a 2 1/2 year old son with CF (that I diagnosed). Before he was diagnosed (and a few times after) I have noticed stringy stuff (which I THINK is mucus). Not to say this is the same thing that you are seeing. I belong to another group (CF Infants and toddlers) and we actually have pictures posted on the site (of bowel movements). Yes, gross, but, with CF, you get used to it <img src="i/expressions/face-icon-small-blush.gif" border="0">) I pray and hope your daughter does not have CF, but please know that if it is and once she starts meds, it will be sooooo much better. My son went from the 10th percentile (before diagnosis) to over the 90th percentile (after diagnosis)!

Email me if you have any questions (curecfnow@aol.com) and the website is <a target=new class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/CF_Infants_Toddlers/
">http://health.groups.yahoo.com/group/CF_Infants_Toddlers/
</a>
Also, my son's website is www.fightforethan.com

Hang in there! You ARE right...not knowing is the WORST! Take care and keep us updated!

Much love,
Amanda
Mommy to Kenzie (5, cf carrier) and Ethan (2, wcf)<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Oops, forgot to log in...but its me! LOL!

Thanks so much. I am waiting for an answer to my request for admission into the group to see the info!

 

[anonymous]

Oops, forgot to log in...but its me! LOL!

Thanks so much. I am waiting for an answer to my request for admission into the group to see the info!

 

[Diana]

The premies can be harder to tell with these things. They take a little while to catch up to their weight and height chart so it's hard to say whats normal. My eldest was premie and she was tiny for ages but she was consistently putting on weight and the doctors were never worried about her. My youngest was born full term and I would say she has more indications of malabsorption than my eldest ever did.

Within the first 2 months it was hard to tell what was going on because it takes a while for their digestive system to kick in properly...she would get constipated so I would take her off the enzymes and then she would get belly aches! Couldn't win. Now she is much more settled down. After experimenting with the enzymes I did notice the difference. When she is not taking them, her stools are loose, smelly (what baby's aren't?) and frequent and when she is taking her enzymes they are more solid. She doesn't get too much oil in there at this stage though. The biggest indication to me is the belly aches she would get if enzymes were not taken so perhaps add this to your list of things to look for. If your baby is not absorbing the fat properly then it is a high possibility she will suffer from some nasty belly aches.

Also when Elisha isn't on her enzymes she also gets those loud bubbles in her belly.

Good luck I hope the results are negitive for CF but if not then everyone here will support you as much as you need and more.

 

[Diana]

The premies can be harder to tell with these things. They take a little while to catch up to their weight and height chart so it's hard to say whats normal. My eldest was premie and she was tiny for ages but she was consistently putting on weight and the doctors were never worried about her. My youngest was born full term and I would say she has more indications of malabsorption than my eldest ever did.

Within the first 2 months it was hard to tell what was going on because it takes a while for their digestive system to kick in properly...she would get constipated so I would take her off the enzymes and then she would get belly aches! Couldn't win. Now she is much more settled down. After experimenting with the enzymes I did notice the difference. When she is not taking them, her stools are loose, smelly (what baby's aren't?) and frequent and when she is taking her enzymes they are more solid. She doesn't get too much oil in there at this stage though. The biggest indication to me is the belly aches she would get if enzymes were not taken so perhaps add this to your list of things to look for. If your baby is not absorbing the fat properly then it is a high possibility she will suffer from some nasty belly aches.

Also when Elisha isn't on her enzymes she also gets those loud bubbles in her belly.

Good luck I hope the results are negitive for CF but if not then everyone here will support you as much as you need and more.

 

[eli]

Sorry of the topic.
Just wanted to say thanks to Amanda for sharing the website on infants and toddlers with CF. I have only just registerd, but unable to log in as yet. I'll try again later.
ps: i'm just about to go and have alook at your sons website, i'm sure it will be great.

Thanks again
Eli

 

[eli]

Sorry of the topic.
Just wanted to say thanks to Amanda for sharing the website on infants and toddlers with CF. I have only just registerd, but unable to log in as yet. I'll try again later.
ps: i'm just about to go and have alook at your sons website, i'm sure it will be great.

Thanks again
Eli