8 week old son possible CF

M

melkeck

New member
Hello all. I just wanted to say what a wonderful sight. I am so thankful. I have been reading through the forums and it has offered me great support, just knowing others have "been there". I was wondering if anyone else has been in this circumstance that I am in. Any info or opinions would be greatly appreciated.
My son is 8 weeks old. He passed meuconium but did not stool on his own at all. They first thought he might have Hircshsprungs. They did a barium and he had no physical abnormalities. After this my son was starting to become very stuffy and raspy. Grunting and gasping all night. We had a fecal fat test that came back positive. The dr asked us to switch to Nutramigen and he started to stool on his own. The dr wanted to do fecal fat test again and came back high and positive. We had genetic testing done on him however not the full panel only the 35 most common strains of CF. This came back negative. Now he has diarrhea instead of constipation and has lost a little weight. He is scheduled for a sweat test, however my concern is that the drs have been saying this might come back false negative as he is so small. We are praying for an answer and hoping for the best. thsnkyou for taking the time to read.
 
M

melkeck

New member
Hello all. I just wanted to say what a wonderful sight. I am so thankful. I have been reading through the forums and it has offered me great support, just knowing others have "been there". I was wondering if anyone else has been in this circumstance that I am in. Any info or opinions would be greatly appreciated.
My son is 8 weeks old. He passed meuconium but did not stool on his own at all. They first thought he might have Hircshsprungs. They did a barium and he had no physical abnormalities. After this my son was starting to become very stuffy and raspy. Grunting and gasping all night. We had a fecal fat test that came back positive. The dr asked us to switch to Nutramigen and he started to stool on his own. The dr wanted to do fecal fat test again and came back high and positive. We had genetic testing done on him however not the full panel only the 35 most common strains of CF. This came back negative. Now he has diarrhea instead of constipation and has lost a little weight. He is scheduled for a sweat test, however my concern is that the drs have been saying this might come back false negative as he is so small. We are praying for an answer and hoping for the best. thsnkyou for taking the time to read.
 
M

melkeck

New member
Hello all. I just wanted to say what a wonderful sight. I am so thankful. I have been reading through the forums and it has offered me great support, just knowing others have "been there". I was wondering if anyone else has been in this circumstance that I am in. Any info or opinions would be greatly appreciated.
My son is 8 weeks old. He passed meuconium but did not stool on his own at all. They first thought he might have Hircshsprungs. They did a barium and he had no physical abnormalities. After this my son was starting to become very stuffy and raspy. Grunting and gasping all night. We had a fecal fat test that came back positive. The dr asked us to switch to Nutramigen and he started to stool on his own. The dr wanted to do fecal fat test again and came back high and positive. We had genetic testing done on him however not the full panel only the 35 most common strains of CF. This came back negative. Now he has diarrhea instead of constipation and has lost a little weight. He is scheduled for a sweat test, however my concern is that the drs have been saying this might come back false negative as he is so small. We are praying for an answer and hoping for the best. thsnkyou for taking the time to read.
 
T

tammykrumrey

Guest
Good luck to you and yur baby. It sounds like you have a good doctor who is taking the steps needed to *hopefully* rule out CF. If it were to be a positive dx, you know where to come back to. I will keep you in my thoughts for quick answers and for your son to get to gaining weight<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Good luck to you and yur baby. It sounds like you have a good doctor who is taking the steps needed to *hopefully* rule out CF. If it were to be a positive dx, you know where to come back to. I will keep you in my thoughts for quick answers and for your son to get to gaining weight<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Good luck to you and yur baby. It sounds like you have a good doctor who is taking the steps needed to *hopefully* rule out CF. If it were to be a positive dx, you know where to come back to. I will keep you in my thoughts for quick answers and for your son to get to gaining weight<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JRPandTJP

New member
We will be thinking of you and hoping for a negative and a turn around.

Our son wasn't diagnosed until 14 weeks after insufficient samples of sweat. Be sure they are also watching his vitamin levels and protein levels as these caused Ben much difficulty until diagnosed due to malabsorption (very dangerous). Ask that they do a Guthrey panel genetic test as this requires only a heel stick and tests for 1000 mutations (take 2 weeks). One hospital system we were first in didn't do this and since he was so small he couldn't give the blood required for the genetic test they wanted to do. We lingered too long with the inadequate sweat test and not the right genetic test.

Keep advocating and don't stop until you get results. Look at possible milk allergies as well. These can really be hard to figure out and can cause digestive/respiatory issues. There is a formula that is hard to come by but is only amino acids and is dairy free but not soy based. You may want to ask about that.

If you can't find a formula and CF stuff is negative, you can consider relactating and keeping dairy out of your diet if need be. La Leche and/or lactation consultant can show you how.

Best wishes...
 
J

JRPandTJP

New member
We will be thinking of you and hoping for a negative and a turn around.

Our son wasn't diagnosed until 14 weeks after insufficient samples of sweat. Be sure they are also watching his vitamin levels and protein levels as these caused Ben much difficulty until diagnosed due to malabsorption (very dangerous). Ask that they do a Guthrey panel genetic test as this requires only a heel stick and tests for 1000 mutations (take 2 weeks). One hospital system we were first in didn't do this and since he was so small he couldn't give the blood required for the genetic test they wanted to do. We lingered too long with the inadequate sweat test and not the right genetic test.

Keep advocating and don't stop until you get results. Look at possible milk allergies as well. These can really be hard to figure out and can cause digestive/respiatory issues. There is a formula that is hard to come by but is only amino acids and is dairy free but not soy based. You may want to ask about that.

If you can't find a formula and CF stuff is negative, you can consider relactating and keeping dairy out of your diet if need be. La Leche and/or lactation consultant can show you how.

Best wishes...
 
J

JRPandTJP

New member
We will be thinking of you and hoping for a negative and a turn around.

Our son wasn't diagnosed until 14 weeks after insufficient samples of sweat. Be sure they are also watching his vitamin levels and protein levels as these caused Ben much difficulty until diagnosed due to malabsorption (very dangerous). Ask that they do a Guthrey panel genetic test as this requires only a heel stick and tests for 1000 mutations (take 2 weeks). One hospital system we were first in didn't do this and since he was so small he couldn't give the blood required for the genetic test they wanted to do. We lingered too long with the inadequate sweat test and not the right genetic test.

Keep advocating and don't stop until you get results. Look at possible milk allergies as well. These can really be hard to figure out and can cause digestive/respiatory issues. There is a formula that is hard to come by but is only amino acids and is dairy free but not soy based. You may want to ask about that.

If you can't find a formula and CF stuff is negative, you can consider relactating and keeping dairy out of your diet if need be. La Leche and/or lactation consultant can show you how.

Best wishes...
 
A

Alyssa

New member
This may or may not apply in your case, but if you do get a "normal" sweat test, be aware that they are not always completely accurate.

Read my blog for our full story, just so you know it happens.
 
A

Alyssa

New member
This may or may not apply in your case, but if you do get a "normal" sweat test, be aware that they are not always completely accurate.

Read my blog for our full story, just so you know it happens.
 
A

Alyssa

New member
This may or may not apply in your case, but if you do get a "normal" sweat test, be aware that they are not always completely accurate.

Read my blog for our full story, just so you know it happens.
 
B

briar2004

New member
this is my first time on and talking with someone who goes through the same thing as i do. my son was 4 months old when he got sick it first started with rsv and then i got really bad he had to be on o2 for a long time before they did a sweat test personally i dont think that a sweat test is the answer. my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live. let me tell you that the faith that i have in god brought me out of all of it. if it wasnt for him then i would of had a nervous breakdown being a single mother and all. i really fill that he only gives us what we can handle. i will pray for you as well as all the other people struggling with this journy. pls let me here from you .......
 
B

briar2004

New member
this is my first time on and talking with someone who goes through the same thing as i do. my son was 4 months old when he got sick it first started with rsv and then i got really bad he had to be on o2 for a long time before they did a sweat test personally i dont think that a sweat test is the answer. my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live. let me tell you that the faith that i have in god brought me out of all of it. if it wasnt for him then i would of had a nervous breakdown being a single mother and all. i really fill that he only gives us what we can handle. i will pray for you as well as all the other people struggling with this journy. pls let me here from you .......
 
B

briar2004

New member
this is my first time on and talking with someone who goes through the same thing as i do. my son was 4 months old when he got sick it first started with rsv and then i got really bad he had to be on o2 for a long time before they did a sweat test personally i dont think that a sweat test is the answer. my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live. let me tell you that the faith that i have in god brought me out of all of it. if it wasnt for him then i would of had a nervous breakdown being a single mother and all. i really fill that he only gives us what we can handle. i will pray for you as well as all the other people struggling with this journy. pls let me here from you .......
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>briar2004</b></i>

my son was 4 months old when he got sick
my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live.
</end quote></div>


Hi Briar,

Just wanted to extend a little encouragement that many people with cf culture pesudomonas and live with it for a long time. I'm 32 and have had it for as long as I can remember...maybe 4 or 5. I just wanted to let you know to keep your head up and stay strong. I can only imagine what it would be like as a parent going through this whole new, learning process about cf. I hope your son is doing better now.



Melkeck,

I hope cf is ruled out for your son. Stay strong as you find out what is going on. As you may have already seen, there are many people on this site who have experienced similar things as what you're going through. I hope you find the support you need.
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>briar2004</b></i>

my son was 4 months old when he got sick
my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live.
</end quote></div>


Hi Briar,

Just wanted to extend a little encouragement that many people with cf culture pesudomonas and live with it for a long time. I'm 32 and have had it for as long as I can remember...maybe 4 or 5. I just wanted to let you know to keep your head up and stay strong. I can only imagine what it would be like as a parent going through this whole new, learning process about cf. I hope your son is doing better now.



Melkeck,

I hope cf is ruled out for your son. Stay strong as you find out what is going on. As you may have already seen, there are many people on this site who have experienced similar things as what you're going through. I hope you find the support you need.
 
C

CowTown

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>briar2004</b></i>

my son was 4 months old when he got sick
my son has 7 different viruses. the big on was pesudomonas and if you know what that is it is the most deadly bacteria that a cf can have they told me that he was not going to live.
</end quote></div>


Hi Briar,

Just wanted to extend a little encouragement that many people with cf culture pesudomonas and live with it for a long time. I'm 32 and have had it for as long as I can remember...maybe 4 or 5. I just wanted to let you know to keep your head up and stay strong. I can only imagine what it would be like as a parent going through this whole new, learning process about cf. I hope your son is doing better now.



Melkeck,

I hope cf is ruled out for your son. Stay strong as you find out what is going on. As you may have already seen, there are many people on this site who have experienced similar things as what you're going through. I hope you find the support you need.
 
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