Scared

[devlinsmom]

I was recently told that my son probally has CF and I am scared out of my mind. He has been sick for 3 weeks. His bowel movements have been horrible. He food is coming out almost whole and he is barely digesting anything. He is getting blotchy patches on his skin and his nose had a white flaky crust on it. He is also throwing up his food every once in a while and it is undigested also. In the past he has had severe asthma issues but he hasn't in a while. We also thought that he was allergic to milk but his allergy test came back negative. Does this sound like CF? My worry is he doesn't have a sweat test for another 2 weeks and I'm worried about his nutrition before then. I just want him to not throw up anymore and to quit have such severe bowel movements. He goes back to our family doctor on Thursday to see the results of his stool study. Does anyone have any advice on what to do before then to his digestion problem under control?

 

[devlinsmom]

I was recently told that my son probally has CF and I am scared out of my mind. He has been sick for 3 weeks. His bowel movements have been horrible. He food is coming out almost whole and he is barely digesting anything. He is getting blotchy patches on his skin and his nose had a white flaky crust on it. He is also throwing up his food every once in a while and it is undigested also. In the past he has had severe asthma issues but he hasn't in a while. We also thought that he was allergic to milk but his allergy test came back negative. Does this sound like CF? My worry is he doesn't have a sweat test for another 2 weeks and I'm worried about his nutrition before then. I just want him to not throw up anymore and to quit have such severe bowel movements. He goes back to our family doctor on Thursday to see the results of his stool study. Does anyone have any advice on what to do before then to his digestion problem under control?

 

[devlinsmom]

I was recently told that my son probally has CF and I am scared out of my mind. He has been sick for 3 weeks. His bowel movements have been horrible. He food is coming out almost whole and he is barely digesting anything. He is getting blotchy patches on his skin and his nose had a white flaky crust on it. He is also throwing up his food every once in a while and it is undigested also. In the past he has had severe asthma issues but he hasn't in a while. We also thought that he was allergic to milk but his allergy test came back negative. Does this sound like CF? My worry is he doesn't have a sweat test for another 2 weeks and I'm worried about his nutrition before then. I just want him to not throw up anymore and to quit have such severe bowel movements. He goes back to our family doctor on Thursday to see the results of his stool study. Does anyone have any advice on what to do before then to his digestion problem under control?

 

[NoExcuses]

I would opt for a gene test and not a sweat test. Genetic tests tend to be much more accurate.

And get the test tomorrow. Go to any doc that will see you tomorrow and get the test. Waiting is not an option.

Good luck

 

[NoExcuses]

I would opt for a gene test and not a sweat test. Genetic tests tend to be much more accurate.

And get the test tomorrow. Go to any doc that will see you tomorrow and get the test. Waiting is not an option.

Good luck

 

[NoExcuses]

I would opt for a gene test and not a sweat test. Genetic tests tend to be much more accurate.

And get the test tomorrow. Go to any doc that will see you tomorrow and get the test. Waiting is not an option.

Good luck

 

[Landy]

I'll try to answer your question/concerns as best I can. I'm sure this is a very scary time for you.

It could be CF, I suppose, but I do know that there are some wicked stomach viruses going around out there in schools, etc., so keep that in mind.

Is your child's skin salty? That can be indicitive of CF. Of course the digestive & respiratory issues can indicate CF too. Failure to thrive is also something they look at when suspecting CF.

I'm not sure how old your child is, but I had much the same digestive issues for months when I was a baby.

If your child is not holding anything down, you could give some foods that are easy to digest for a few days. If I remember correctly, Mom said that they fed me mashed up bananas, skim milk and rice for awhile until my digestive system was able to hold things down, then they gradually progressed onto other foods.

This was back in the mid-60's, so there may be a different way to do it now, but I think holding down <i>some </i>food would be better than nothing. Of course, seek your physicians opinion before taking my suggestion.

Also, if you post this question in the "Families" section, I'll bet you'll get a lot of responses from other parents that have been through the same thing.

Please let us know how your stool & sweat test comes out and I'll keep you and your child in my thoughts/prayers.

 

[Landy]

I'll try to answer your question/concerns as best I can. I'm sure this is a very scary time for you.

It could be CF, I suppose, but I do know that there are some wicked stomach viruses going around out there in schools, etc., so keep that in mind.

Is your child's skin salty? That can be indicitive of CF. Of course the digestive & respiratory issues can indicate CF too. Failure to thrive is also something they look at when suspecting CF.

I'm not sure how old your child is, but I had much the same digestive issues for months when I was a baby.

If your child is not holding anything down, you could give some foods that are easy to digest for a few days. If I remember correctly, Mom said that they fed me mashed up bananas, skim milk and rice for awhile until my digestive system was able to hold things down, then they gradually progressed onto other foods.

This was back in the mid-60's, so there may be a different way to do it now, but I think holding down <i>some </i>food would be better than nothing. Of course, seek your physicians opinion before taking my suggestion.

Also, if you post this question in the "Families" section, I'll bet you'll get a lot of responses from other parents that have been through the same thing.

Please let us know how your stool & sweat test comes out and I'll keep you and your child in my thoughts/prayers.

 

[Landy]

I'll try to answer your question/concerns as best I can. I'm sure this is a very scary time for you.

It could be CF, I suppose, but I do know that there are some wicked stomach viruses going around out there in schools, etc., so keep that in mind.

Is your child's skin salty? That can be indicitive of CF. Of course the digestive & respiratory issues can indicate CF too. Failure to thrive is also something they look at when suspecting CF.

I'm not sure how old your child is, but I had much the same digestive issues for months when I was a baby.

If your child is not holding anything down, you could give some foods that are easy to digest for a few days. If I remember correctly, Mom said that they fed me mashed up bananas, skim milk and rice for awhile until my digestive system was able to hold things down, then they gradually progressed onto other foods.

This was back in the mid-60's, so there may be a different way to do it now, but I think holding down <i>some </i>food would be better than nothing. Of course, seek your physicians opinion before taking my suggestion.

Also, if you post this question in the "Families" section, I'll bet you'll get a lot of responses from other parents that have been through the same thing.

Please let us know how your stool & sweat test comes out and I'll keep you and your child in my thoughts/prayers.

 

[Alyssa]

I may not be much help, as we don't have to deal with digestive issues with CF. But a couple of things you mentioned don't sound the same as what I've heard from others on this site about digestive issues. Is there something else the doctor specifically mentioned?

Again - I could be wrong about these things, but a lot of what you said doesn't sound that much like CF to me (at this point without more information from you) but:

1) Throwing up is not a "common CF symptom" Sometime it happens because of so much coughing or getting the mucus out of the lungs right up to the back of the throat can make a person gag and throw up. But just throwing up food for no apparent reason is not really a direct correlation to a CF symptom.
2) Undigested food in bowel movements are not typically described that way in CF. Most people describe very "smelly" "oily" "orange-ish color" "greasy" bowel movements. Accompanied by lots of gas and sometimes a distended stomach.
3) No "blotchy patches" on their skin -- unless what you are describing is dried salt from his skin. But this should wipe or wash right off. That is usually around the hair line, and maybe on the back or stomach (wherever he is sweating most)

On the other hand, in general asthma symptoms, digestive issues & failure to thrive are all classic symptoms of CF, but you definitely need more information.

Sweat tests do have their problems with not always being accurate (see my blog for more detailed info) -- I agree, genetic testing is always the best -- and FULL genetic testing is always better than any of the screening -- be sure to ask for the full testing which includes looking for all 1500 genetic mutations.

I know it's a very difficult time right now, hang in there and keep us updated

 

[Alyssa]

I may not be much help, as we don't have to deal with digestive issues with CF. But a couple of things you mentioned don't sound the same as what I've heard from others on this site about digestive issues. Is there something else the doctor specifically mentioned?

Again - I could be wrong about these things, but a lot of what you said doesn't sound that much like CF to me (at this point without more information from you) but:

1) Throwing up is not a "common CF symptom" Sometime it happens because of so much coughing or getting the mucus out of the lungs right up to the back of the throat can make a person gag and throw up. But just throwing up food for no apparent reason is not really a direct correlation to a CF symptom.
2) Undigested food in bowel movements are not typically described that way in CF. Most people describe very "smelly" "oily" "orange-ish color" "greasy" bowel movements. Accompanied by lots of gas and sometimes a distended stomach.
3) No "blotchy patches" on their skin -- unless what you are describing is dried salt from his skin. But this should wipe or wash right off. That is usually around the hair line, and maybe on the back or stomach (wherever he is sweating most)

On the other hand, in general asthma symptoms, digestive issues & failure to thrive are all classic symptoms of CF, but you definitely need more information.

Sweat tests do have their problems with not always being accurate (see my blog for more detailed info) -- I agree, genetic testing is always the best -- and FULL genetic testing is always better than any of the screening -- be sure to ask for the full testing which includes looking for all 1500 genetic mutations.

I know it's a very difficult time right now, hang in there and keep us updated

 

[Alyssa]

I may not be much help, as we don't have to deal with digestive issues with CF. But a couple of things you mentioned don't sound the same as what I've heard from others on this site about digestive issues. Is there something else the doctor specifically mentioned?

Again - I could be wrong about these things, but a lot of what you said doesn't sound that much like CF to me (at this point without more information from you) but:

1) Throwing up is not a "common CF symptom" Sometime it happens because of so much coughing or getting the mucus out of the lungs right up to the back of the throat can make a person gag and throw up. But just throwing up food for no apparent reason is not really a direct correlation to a CF symptom.
2) Undigested food in bowel movements are not typically described that way in CF. Most people describe very "smelly" "oily" "orange-ish color" "greasy" bowel movements. Accompanied by lots of gas and sometimes a distended stomach.
3) No "blotchy patches" on their skin -- unless what you are describing is dried salt from his skin. But this should wipe or wash right off. That is usually around the hair line, and maybe on the back or stomach (wherever he is sweating most)

On the other hand, in general asthma symptoms, digestive issues & failure to thrive are all classic symptoms of CF, but you definitely need more information.

Sweat tests do have their problems with not always being accurate (see my blog for more detailed info) -- I agree, genetic testing is always the best -- and FULL genetic testing is always better than any of the screening -- be sure to ask for the full testing which includes looking for all 1500 genetic mutations.

I know it's a very difficult time right now, hang in there and keep us updated