some questions

L

lucysmomma

New member
My daughter is 5 months old and we have been dealing with a few health problems since she was born. In her first day of life she had over 10 mecomium stools. Since then she has had reflux, been hospitalized for RSV, had diarrhea/constipation issues, milk/soy intolerance...
SHe is now on neocate formula and all of her issues are better, with the exception of the cough. Our GI wants her tested for CF. He said the mecomium is a major red flag for CF. I cant find that info ANYWHERE. I have looked and looked. Everyone mentions having a mecomium blockage. I mean there is no harm in having her tested but I am scared to death now! Has ANYONE ever heard of that before?
We are having her tested on the 6th and its going to be a LONG wait for us! I feel like life has stopped for us. Its agony. Does anyone ahve any opinions?? Please, any information would be helpful! Thank you so much!
 
L

lucysmomma

New member
My daughter is 5 months old and we have been dealing with a few health problems since she was born. In her first day of life she had over 10 mecomium stools. Since then she has had reflux, been hospitalized for RSV, had diarrhea/constipation issues, milk/soy intolerance...
SHe is now on neocate formula and all of her issues are better, with the exception of the cough. Our GI wants her tested for CF. He said the mecomium is a major red flag for CF. I cant find that info ANYWHERE. I have looked and looked. Everyone mentions having a mecomium blockage. I mean there is no harm in having her tested but I am scared to death now! Has ANYONE ever heard of that before?
We are having her tested on the 6th and its going to be a LONG wait for us! I feel like life has stopped for us. Its agony. Does anyone ahve any opinions?? Please, any information would be helpful! Thank you so much!
 
L

lucysmomma

New member
My daughter is 5 months old and we have been dealing with a few health problems since she was born. In her first day of life she had over 10 mecomium stools. Since then she has had reflux, been hospitalized for RSV, had diarrhea/constipation issues, milk/soy intolerance...
SHe is now on neocate formula and all of her issues are better, with the exception of the cough. Our GI wants her tested for CF. He said the mecomium is a major red flag for CF. I cant find that info ANYWHERE. I have looked and looked. Everyone mentions having a mecomium blockage. I mean there is no harm in having her tested but I am scared to death now! Has ANYONE ever heard of that before?
We are having her tested on the 6th and its going to be a LONG wait for us! I feel like life has stopped for us. Its agony. Does anyone ahve any opinions?? Please, any information would be helpful! Thank you so much!
 
R

Ratatosk

Administrator
Staff member
DS was born with meconium illeus -- intestinal blockage caused by thick sticky stools -- same mucus which can cause problems with the lungs, can cause issues with the intestinal tract. We found out when he was just a couple days old; however, a friend of mine's granddaughter wasn't diagnosed until she was about a year and a half -- had constipation issues, had RSV, sinus issues, frequent infections.

Are they planning to do genetic blood testing or is the doctor going to have a sweat test done?
 
R

Ratatosk

Administrator
Staff member
DS was born with meconium illeus -- intestinal blockage caused by thick sticky stools -- same mucus which can cause problems with the lungs, can cause issues with the intestinal tract. We found out when he was just a couple days old; however, a friend of mine's granddaughter wasn't diagnosed until she was about a year and a half -- had constipation issues, had RSV, sinus issues, frequent infections.

Are they planning to do genetic blood testing or is the doctor going to have a sweat test done?
 
R

Ratatosk

Administrator
Staff member
DS was born with meconium illeus -- intestinal blockage caused by thick sticky stools -- same mucus which can cause problems with the lungs, can cause issues with the intestinal tract. We found out when he was just a couple days old; however, a friend of mine's granddaughter wasn't diagnosed until she was about a year and a half -- had constipation issues, had RSV, sinus issues, frequent infections.

Are they planning to do genetic blood testing or is the doctor going to have a sweat test done?
 
L

lucysmomma

New member
she is having the sweat test done.
That is what is confusing me- everyone says a BLOCKAGE- not TOO much mecomium. She definately did not have a blockage! She jsut kept going and going!
 
L

lucysmomma

New member
she is having the sweat test done.
That is what is confusing me- everyone says a BLOCKAGE- not TOO much mecomium. She definately did not have a blockage! She jsut kept going and going!
 
L

lucysmomma

New member
she is having the sweat test done.
That is what is confusing me- everyone says a BLOCKAGE- not TOO much mecomium. She definately did not have a blockage! She jsut kept going and going!
 
M

Mommafirst

Guest
I haven't heard that too many meconium stools is a symptom of CF. But the sweat test is pretty easy, it'd be worth it to have her checked out. I know the testing is life shattering, but the majority of people tested for CF do NOT have it.

Is your daughter gaining weight okay? Her symptoms are consistent with lots of kid stuff, including, but not limited to, CF.

I wish you luck! And if the sweat test is questionable (IMO over 25 in kids under a year), I'd strongly suggest having genetic blood work taken.
 
M

Mommafirst

Guest
I haven't heard that too many meconium stools is a symptom of CF. But the sweat test is pretty easy, it'd be worth it to have her checked out. I know the testing is life shattering, but the majority of people tested for CF do NOT have it.

Is your daughter gaining weight okay? Her symptoms are consistent with lots of kid stuff, including, but not limited to, CF.

I wish you luck! And if the sweat test is questionable (IMO over 25 in kids under a year), I'd strongly suggest having genetic blood work taken.
 
M

Mommafirst

Guest
I haven't heard that too many meconium stools is a symptom of CF. But the sweat test is pretty easy, it'd be worth it to have her checked out. I know the testing is life shattering, but the majority of people tested for CF do NOT have it.

Is your daughter gaining weight okay? Her symptoms are consistent with lots of kid stuff, including, but not limited to, CF.

I wish you luck! And if the sweat test is questionable (IMO over 25 in kids under a year), I'd strongly suggest having genetic blood work taken.
 
R

Ratatosk

Administrator
Staff member
Ditto on the blood work -- DS's sweat test AT an accreditted CF facility was 32 -- I believe up to 40 is considered normal -- 40-60 borderline. Blood tests showed he had CF. In the case of my friend's granddaughter, who was tested at 1 1/2 years -- a sweat test was conducted at their clinic and apparently they knew immediately because the levels were so high.
 
R

Ratatosk

Administrator
Staff member
Ditto on the blood work -- DS's sweat test AT an accreditted CF facility was 32 -- I believe up to 40 is considered normal -- 40-60 borderline. Blood tests showed he had CF. In the case of my friend's granddaughter, who was tested at 1 1/2 years -- a sweat test was conducted at their clinic and apparently they knew immediately because the levels were so high.
 
R

Ratatosk

Administrator
Staff member
Ditto on the blood work -- DS's sweat test AT an accreditted CF facility was 32 -- I believe up to 40 is considered normal -- 40-60 borderline. Blood tests showed he had CF. In the case of my friend's granddaughter, who was tested at 1 1/2 years -- a sweat test was conducted at their clinic and apparently they knew immediately because the levels were so high.
 
L

lucysmomma

New member
Thank you all for your help! I will be SURE to ask about her number specifically. I am not sure why she would have so many mecomium stools but from everything I have read and from searching the forums here I have not heard ANYTHING other than about a mecomium blockage. So hopefully we are in the clear. Her symptoms really dont conincide with CF. The only time she has ever had diarrhea is when she was being exposed to milk/soy (even trace amounts), the only symptoms that she still has are the cough (which is quite nasty but can be attributed to reflux or allergies, and the fact she was hospitalized for RSV which is common anyway!

I am starting to feel better and keep chanting to myself that whatever it is-CF or not- we can handle it. Just when you read the statistics on CF it feels like a death sentence. The numbers are scary.
 
L

lucysmomma

New member
Thank you all for your help! I will be SURE to ask about her number specifically. I am not sure why she would have so many mecomium stools but from everything I have read and from searching the forums here I have not heard ANYTHING other than about a mecomium blockage. So hopefully we are in the clear. Her symptoms really dont conincide with CF. The only time she has ever had diarrhea is when she was being exposed to milk/soy (even trace amounts), the only symptoms that she still has are the cough (which is quite nasty but can be attributed to reflux or allergies, and the fact she was hospitalized for RSV which is common anyway!

I am starting to feel better and keep chanting to myself that whatever it is-CF or not- we can handle it. Just when you read the statistics on CF it feels like a death sentence. The numbers are scary.
 
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