Should he be tested again?

pepperderr · Mar 19, 2009

Well, I will try to keep it shorter this time. My son is soon 5 and failure to thrive since about 6 months old. He was put on a feeding tube till he was a year and has been on Pediausre and DuoCal ever since to try to gain weight. When he had the feeding tube in, he would just barely gain even with the highest amount of calories they could safely give him plus breastfeeding plus eventually baby food. If he has lots and lots of extra calories he will gain a bit. If I take him of the Pediasure, he loses again.

They did the sweat test at 6 months when they put him in the hospital to try to figure out what was going on. They said he passed but they never gave us a number. He's had a runny nose practically every day since he was born. Getting his tonsils and adenoids out did help that a bit. Right now he has a cough with mucus where he will just cough off and on all day and ask for a tissue to spit in...being 4 he doesn't actually spit it out. This may be still lingering from a cold he has had where he was throwing up mucus every morning. A few days ago he had a fever 104.7 orally. He didn't seem sick. He just said he was cold and when I felt him, he was hot so I checked his temp. Other than the cough he seems to have no other problems.

When he goes to the doctor in May, I am going to ask them to check a few things again. It will likely be his last GI check up soon and I don't want him to stop seeing the doctor before we really know what is wrong if we can figure it out. I am going to ask the doctor to look up what the number was of his sweat test. If it is close to boarderline, should I have them do the genetic one? If it is not near boarderline can I assume it is correct? I would assume it was done a an accredited hospital, because the hospital we were at is on the list and the one in charge of the CF part is my other DS asthma doctor. My other son was tested too because he had simular symptoms but they said his was normal too and just diagnosed him with asthma. Is the genetic test a blood test? I want them to check his B12 again. They said he had high methylmalonic acid which I read means low b12. I don't understand it but they check him for methylmalonic acidemia and it was negative. Do you think the insurance would cover the genetic test if the sweat test is already negative? Thanks.

PEPPERDERR

pepperderr · Mar 19, 2009

Well, I will try to keep it shorter this time. My son is soon 5 and failure to thrive since about 6 months old. He was put on a feeding tube till he was a year and has been on Pediausre and DuoCal ever since to try to gain weight. When he had the feeding tube in, he would just barely gain even with the highest amount of calories they could safely give him plus breastfeeding plus eventually baby food. If he has lots and lots of extra calories he will gain a bit. If I take him of the Pediasure, he loses again.

They did the sweat test at 6 months when they put him in the hospital to try to figure out what was going on. They said he passed but they never gave us a number. He's had a runny nose practically every day since he was born. Getting his tonsils and adenoids out did help that a bit. Right now he has a cough with mucus where he will just cough off and on all day and ask for a tissue to spit in...being 4 he doesn't actually spit it out. This may be still lingering from a cold he has had where he was throwing up mucus every morning. A few days ago he had a fever 104.7 orally. He didn't seem sick. He just said he was cold and when I felt him, he was hot so I checked his temp. Other than the cough he seems to have no other problems.

When he goes to the doctor in May, I am going to ask them to check a few things again. It will likely be his last GI check up soon and I don't want him to stop seeing the doctor before we really know what is wrong if we can figure it out. I am going to ask the doctor to look up what the number was of his sweat test. If it is close to boarderline, should I have them do the genetic one? If it is not near boarderline can I assume it is correct? I would assume it was done a an accredited hospital, because the hospital we were at is on the list and the one in charge of the CF part is my other DS asthma doctor. My other son was tested too because he had simular symptoms but they said his was normal too and just diagnosed him with asthma. Is the genetic test a blood test? I want them to check his B12 again. They said he had high methylmalonic acid which I read means low b12. I don't understand it but they check him for methylmalonic acidemia and it was negative. Do you think the insurance would cover the genetic test if the sweat test is already negative? Thanks.

PEPPERDERR

pepperderr · Mar 19, 2009

Well, I will try to keep it shorter this time. My son is soon 5 and failure to thrive since about 6 months old. He was put on a feeding tube till he was a year and has been on Pediausre and DuoCal ever since to try to gain weight. When he had the feeding tube in, he would just barely gain even with the highest amount of calories they could safely give him plus breastfeeding plus eventually baby food. If he has lots and lots of extra calories he will gain a bit. If I take him of the Pediasure, he loses again.

They did the sweat test at 6 months when they put him in the hospital to try to figure out what was going on. They said he passed but they never gave us a number. He's had a runny nose practically every day since he was born. Getting his tonsils and adenoids out did help that a bit. Right now he has a cough with mucus where he will just cough off and on all day and ask for a tissue to spit in...being 4 he doesn't actually spit it out. This may be still lingering from a cold he has had where he was throwing up mucus every morning. A few days ago he had a fever 104.7 orally. He didn't seem sick. He just said he was cold and when I felt him, he was hot so I checked his temp. Other than the cough he seems to have no other problems.

When he goes to the doctor in May, I am going to ask them to check a few things again. It will likely be his last GI check up soon and I don't want him to stop seeing the doctor before we really know what is wrong if we can figure it out. I am going to ask the doctor to look up what the number was of his sweat test. If it is close to boarderline, should I have them do the genetic one? If it is not near boarderline can I assume it is correct? I would assume it was done a an accredited hospital, because the hospital we were at is on the list and the one in charge of the CF part is my other DS asthma doctor. My other son was tested too because he had simular symptoms but they said his was normal too and just diagnosed him with asthma. Is the genetic test a blood test? I want them to check his B12 again. They said he had high methylmalonic acid which I read means low b12. I don't understand it but they check him for methylmalonic acidemia and it was negative. Do you think the insurance would cover the genetic test if the sweat test is already negative? Thanks.

PEPPERDERR

pepperderr · Mar 19, 2009

Well, I will try to keep it shorter this time. My son is soon 5 and failure to thrive since about 6 months old. He was put on a feeding tube till he was a year and has been on Pediausre and DuoCal ever since to try to gain weight. When he had the feeding tube in, he would just barely gain even with the highest amount of calories they could safely give him plus breastfeeding plus eventually baby food. If he has lots and lots of extra calories he will gain a bit. If I take him of the Pediasure, he loses again.

They did the sweat test at 6 months when they put him in the hospital to try to figure out what was going on. They said he passed but they never gave us a number. He's had a runny nose practically every day since he was born. Getting his tonsils and adenoids out did help that a bit. Right now he has a cough with mucus where he will just cough off and on all day and ask for a tissue to spit in...being 4 he doesn't actually spit it out. This may be still lingering from a cold he has had where he was throwing up mucus every morning. A few days ago he had a fever 104.7 orally. He didn't seem sick. He just said he was cold and when I felt him, he was hot so I checked his temp. Other than the cough he seems to have no other problems.

When he goes to the doctor in May, I am going to ask them to check a few things again. It will likely be his last GI check up soon and I don't want him to stop seeing the doctor before we really know what is wrong if we can figure it out. I am going to ask the doctor to look up what the number was of his sweat test. If it is close to boarderline, should I have them do the genetic one? If it is not near boarderline can I assume it is correct? I would assume it was done a an accredited hospital, because the hospital we were at is on the list and the one in charge of the CF part is my other DS asthma doctor. My other son was tested too because he had simular symptoms but they said his was normal too and just diagnosed him with asthma. Is the genetic test a blood test? I want them to check his B12 again. They said he had high methylmalonic acid which I read means low b12. I don't understand it but they check him for methylmalonic acidemia and it was negative. Do you think the insurance would cover the genetic test if the sweat test is already negative? Thanks.

PEPPERDERR

pepperderr · Mar 19, 2009

Well, I will try to keep it shorter this time. My son is soon 5 and failure to thrive since about 6 months old. He was put on a feeding tube till he was a year and has been on Pediausre and DuoCal ever since to try to gain weight. When he had the feeding tube in, he would just barely gain even with the highest amount of calories they could safely give him plus breastfeeding plus eventually baby food. If he has lots and lots of extra calories he will gain a bit. If I take him of the Pediasure, he loses again.
 
 They did the sweat test at 6 months when they put him in the hospital to try to figure out what was going on. They said he passed but they never gave us a number. He's had a runny nose practically every day since he was born. Getting his tonsils and adenoids out did help that a bit. Right now he has a cough with mucus where he will just cough off and on all day and ask for a tissue to spit in...being 4 he doesn't actually spit it out. This may be still lingering from a cold he has had where he was throwing up mucus every morning. A few days ago he had a fever 104.7 orally. He didn't seem sick. He just said he was cold and when I felt him, he was hot so I checked his temp. Other than the cough he seems to have no other problems.
 
 When he goes to the doctor in May, I am going to ask them to check a few things again. It will likely be his last GI check up soon and I don't want him to stop seeing the doctor before we really know what is wrong if we can figure it out. I am going to ask the doctor to look up what the number was of his sweat test. If it is close to boarderline, should I have them do the genetic one? If it is not near boarderline can I assume it is correct? I would assume it was done a an accredited hospital, because the hospital we were at is on the list and the one in charge of the CF part is my other DS asthma doctor. My other son was tested too because he had simular symptoms but they said his was normal too and just diagnosed him with asthma. Is the genetic test a blood test? I want them to check his B12 again. They said he had high methylmalonic acid which I read means low b12. I don't understand it but they check him for methylmalonic acidemia and it was negative. Do you think the insurance would cover the genetic test if the sweat test is already negative? Thanks.
 
 PEPPERDERR

Ratatosk · Mar 19, 2009

I would really push for genetic testing -- the amplified, not the one which tests for the most common mutations. A blood test which tests for thousands of mutations instead of just a handful.

My son had a normal test of 32, yet his blood test indicated cf.

How are his stools? Are they bulky, yellow, oily, frequent? Have they ever done a fecal fat test on them to determine if he has issue digesting fat?

IMO push, push push for answers! At the very least to RULE out CF to determine what's wrong with him. Even if it's an accreditted CF clnic, if they're not concerned, then I would go elsewhere.

Ratatosk · Mar 19, 2009

I would really push for genetic testing -- the amplified, not the one which tests for the most common mutations. A blood test which tests for thousands of mutations instead of just a handful.

My son had a normal test of 32, yet his blood test indicated cf.

How are his stools? Are they bulky, yellow, oily, frequent? Have they ever done a fecal fat test on them to determine if he has issue digesting fat?

IMO push, push push for answers! At the very least to RULE out CF to determine what's wrong with him. Even if it's an accreditted CF clnic, if they're not concerned, then I would go elsewhere.

Ratatosk · Mar 19, 2009

I would really push for genetic testing -- the amplified, not the one which tests for the most common mutations. A blood test which tests for thousands of mutations instead of just a handful.

My son had a normal test of 32, yet his blood test indicated cf.

How are his stools? Are they bulky, yellow, oily, frequent? Have they ever done a fecal fat test on them to determine if he has issue digesting fat?

IMO push, push push for answers! At the very least to RULE out CF to determine what's wrong with him. Even if it's an accreditted CF clnic, if they're not concerned, then I would go elsewhere.

Ratatosk · Mar 19, 2009

I would really push for genetic testing -- the amplified, not the one which tests for the most common mutations. A blood test which tests for thousands of mutations instead of just a handful.

My son had a normal test of 32, yet his blood test indicated cf.

How are his stools? Are they bulky, yellow, oily, frequent? Have they ever done a fecal fat test on them to determine if he has issue digesting fat?

IMO push, push push for answers! At the very least to RULE out CF to determine what's wrong with him. Even if it's an accreditted CF clnic, if they're not concerned, then I would go elsewhere.

Ratatosk · Mar 19, 2009

I would really push for genetic testing -- the amplified, not the one which tests for the most common mutations. A blood test which tests for thousands of mutations instead of just a handful.
 
 My son had a normal test of 32, yet his blood test indicated cf.
 
 How are his stools? Are they bulky, yellow, oily, frequent? Have they ever done a fecal fat test on them to determine if he has issue digesting fat?
 
 IMO push, push push for answers! At the very least to RULE out CF to determine what's wrong with him. Even if it's an accreditted CF clnic, if they're not concerned, then I would go elsewhere.

Ratatosk · Mar 19, 2009

Oh, and you can also contact your clinic or hospital and fill out a release of information form. I do that after clinic appointments so they'll send me copies of lab reports, culture & blood test results, doctors notes.. 'Cuz a lot of times, I'll just get a call from the nurse saying everything is fine.

So maybe you should figure out the date of the original sweat test and contact the release of information department and request those results.

Ratatosk · Mar 19, 2009

Oh, and you can also contact your clinic or hospital and fill out a release of information form. I do that after clinic appointments so they'll send me copies of lab reports, culture & blood test results, doctors notes.. 'Cuz a lot of times, I'll just get a call from the nurse saying everything is fine.

So maybe you should figure out the date of the original sweat test and contact the release of information department and request those results.

Ratatosk · Mar 19, 2009

Oh, and you can also contact your clinic or hospital and fill out a release of information form. I do that after clinic appointments so they'll send me copies of lab reports, culture & blood test results, doctors notes.. 'Cuz a lot of times, I'll just get a call from the nurse saying everything is fine.

So maybe you should figure out the date of the original sweat test and contact the release of information department and request those results.

Ratatosk · Mar 19, 2009

Oh, and you can also contact your clinic or hospital and fill out a release of information form. I do that after clinic appointments so they'll send me copies of lab reports, culture & blood test results, doctors notes.. 'Cuz a lot of times, I'll just get a call from the nurse saying everything is fine.

So maybe you should figure out the date of the original sweat test and contact the release of information department and request those results.

Ratatosk · Mar 19, 2009

Oh, and you can also contact your clinic or hospital and fill out a release of information form. I do that after clinic appointments so they'll send me copies of lab reports, culture & blood test results, doctors notes.. 'Cuz a lot of times, I'll just get a call from the nurse saying everything is fine.
 
 So maybe you should figure out the date of the original sweat test and contact the release of information department and request those results.

pepperderr · Mar 19, 2009

I think I will call my insurance up and ask them about if they cover the genetic testing. He had a biopsy done for genetic testing to test for the metheylmalonic acidemia and I think after years of it being billed to us over and over and sent probably to collections too, it finally got taken care of. His doctor that sent him for the test was practically 110% sure he had it and felt bad that it wasn't covered. They said they wouldn't cover it because we didn't get prior authorization from the HEAD of the hospital or something first...not his doctor. Some head guy had to approve it first.

As far as his stools, he had some pretty gross ones to begin with but we are thinking it was due to lactose intollerance. When he gets lactaid, they are not so bad. The doctor thinks it is from the milk protien in the Pediasuare I guess but if he doesn't drink Pediasure, he won't gain and will likely lose weight. My other son did have some kind of test done on his stools because they really thought he might have CF too but I guess it turned out to be nothing..as I posted before, he has asthma. They never did that stool test on the 4yo that I know of.

Last night he was fine sleeping but the night before I kept getting up checking on him because his breathing seemed soooo bad. When he had his tongue clipped because he was tongue tied(another thing they tried to do to see if it would help him gain weight), the doctor said he had laryngomalacia where the windpipe can close in or something. He was breathing really horrible after the proceedure and had oxygen right there in the room. They said it was because the stuff they used to numb his tongue probably got to his throat. Anyway, that is what it sounded like the way he was breathing two nights ago. He woke up yesterday and seemed fine so I don't know what was the problem.

It has been amlost 5 years of different tests with no answers. As much as I don't want it to be CF of course, I want to know what is making my son not be able to gain weight. It is not normal to lose 6oz a week as a baby where you are supposed to be gaining and it has just been that way the whole time. He had the vomiting after every feeding but with zantac that went away and he still lost weight. My other son is on Prevacid now or he will throw up just about every night. He was about 5yo when his cough 24/7 started so I am wondering if maybe my 4yo is starting with the same thing only his cough is definitely productive.

Thanks for your input. I know most people that have it are diagnosed right away but like I said, I am just looking for answers before we just say give him Pediasure the rest of his life so he will gain and he will be fine.

PEPPERDERR

pepperderr · Mar 19, 2009

I think I will call my insurance up and ask them about if they cover the genetic testing. He had a biopsy done for genetic testing to test for the metheylmalonic acidemia and I think after years of it being billed to us over and over and sent probably to collections too, it finally got taken care of. His doctor that sent him for the test was practically 110% sure he had it and felt bad that it wasn't covered. They said they wouldn't cover it because we didn't get prior authorization from the HEAD of the hospital or something first...not his doctor. Some head guy had to approve it first.

As far as his stools, he had some pretty gross ones to begin with but we are thinking it was due to lactose intollerance. When he gets lactaid, they are not so bad. The doctor thinks it is from the milk protien in the Pediasuare I guess but if he doesn't drink Pediasure, he won't gain and will likely lose weight. My other son did have some kind of test done on his stools because they really thought he might have CF too but I guess it turned out to be nothing..as I posted before, he has asthma. They never did that stool test on the 4yo that I know of.

Last night he was fine sleeping but the night before I kept getting up checking on him because his breathing seemed soooo bad. When he had his tongue clipped because he was tongue tied(another thing they tried to do to see if it would help him gain weight), the doctor said he had laryngomalacia where the windpipe can close in or something. He was breathing really horrible after the proceedure and had oxygen right there in the room. They said it was because the stuff they used to numb his tongue probably got to his throat. Anyway, that is what it sounded like the way he was breathing two nights ago. He woke up yesterday and seemed fine so I don't know what was the problem.

It has been amlost 5 years of different tests with no answers. As much as I don't want it to be CF of course, I want to know what is making my son not be able to gain weight. It is not normal to lose 6oz a week as a baby where you are supposed to be gaining and it has just been that way the whole time. He had the vomiting after every feeding but with zantac that went away and he still lost weight. My other son is on Prevacid now or he will throw up just about every night. He was about 5yo when his cough 24/7 started so I am wondering if maybe my 4yo is starting with the same thing only his cough is definitely productive.

Thanks for your input. I know most people that have it are diagnosed right away but like I said, I am just looking for answers before we just say give him Pediasure the rest of his life so he will gain and he will be fine.

PEPPERDERR

pepperderr · Mar 19, 2009

I think I will call my insurance up and ask them about if they cover the genetic testing. He had a biopsy done for genetic testing to test for the metheylmalonic acidemia and I think after years of it being billed to us over and over and sent probably to collections too, it finally got taken care of. His doctor that sent him for the test was practically 110% sure he had it and felt bad that it wasn't covered. They said they wouldn't cover it because we didn't get prior authorization from the HEAD of the hospital or something first...not his doctor. Some head guy had to approve it first.

As far as his stools, he had some pretty gross ones to begin with but we are thinking it was due to lactose intollerance. When he gets lactaid, they are not so bad. The doctor thinks it is from the milk protien in the Pediasuare I guess but if he doesn't drink Pediasure, he won't gain and will likely lose weight. My other son did have some kind of test done on his stools because they really thought he might have CF too but I guess it turned out to be nothing..as I posted before, he has asthma. They never did that stool test on the 4yo that I know of.

Last night he was fine sleeping but the night before I kept getting up checking on him because his breathing seemed soooo bad. When he had his tongue clipped because he was tongue tied(another thing they tried to do to see if it would help him gain weight), the doctor said he had laryngomalacia where the windpipe can close in or something. He was breathing really horrible after the proceedure and had oxygen right there in the room. They said it was because the stuff they used to numb his tongue probably got to his throat. Anyway, that is what it sounded like the way he was breathing two nights ago. He woke up yesterday and seemed fine so I don't know what was the problem.

It has been amlost 5 years of different tests with no answers. As much as I don't want it to be CF of course, I want to know what is making my son not be able to gain weight. It is not normal to lose 6oz a week as a baby where you are supposed to be gaining and it has just been that way the whole time. He had the vomiting after every feeding but with zantac that went away and he still lost weight. My other son is on Prevacid now or he will throw up just about every night. He was about 5yo when his cough 24/7 started so I am wondering if maybe my 4yo is starting with the same thing only his cough is definitely productive.

Thanks for your input. I know most people that have it are diagnosed right away but like I said, I am just looking for answers before we just say give him Pediasure the rest of his life so he will gain and he will be fine.

PEPPERDERR

pepperderr · Mar 19, 2009

I think I will call my insurance up and ask them about if they cover the genetic testing. He had a biopsy done for genetic testing to test for the metheylmalonic acidemia and I think after years of it being billed to us over and over and sent probably to collections too, it finally got taken care of. His doctor that sent him for the test was practically 110% sure he had it and felt bad that it wasn't covered. They said they wouldn't cover it because we didn't get prior authorization from the HEAD of the hospital or something first...not his doctor. Some head guy had to approve it first.

As far as his stools, he had some pretty gross ones to begin with but we are thinking it was due to lactose intollerance. When he gets lactaid, they are not so bad. The doctor thinks it is from the milk protien in the Pediasuare I guess but if he doesn't drink Pediasure, he won't gain and will likely lose weight. My other son did have some kind of test done on his stools because they really thought he might have CF too but I guess it turned out to be nothing..as I posted before, he has asthma. They never did that stool test on the 4yo that I know of.

Last night he was fine sleeping but the night before I kept getting up checking on him because his breathing seemed soooo bad. When he had his tongue clipped because he was tongue tied(another thing they tried to do to see if it would help him gain weight), the doctor said he had laryngomalacia where the windpipe can close in or something. He was breathing really horrible after the proceedure and had oxygen right there in the room. They said it was because the stuff they used to numb his tongue probably got to his throat. Anyway, that is what it sounded like the way he was breathing two nights ago. He woke up yesterday and seemed fine so I don't know what was the problem.

It has been amlost 5 years of different tests with no answers. As much as I don't want it to be CF of course, I want to know what is making my son not be able to gain weight. It is not normal to lose 6oz a week as a baby where you are supposed to be gaining and it has just been that way the whole time. He had the vomiting after every feeding but with zantac that went away and he still lost weight. My other son is on Prevacid now or he will throw up just about every night. He was about 5yo when his cough 24/7 started so I am wondering if maybe my 4yo is starting with the same thing only his cough is definitely productive.

Thanks for your input. I know most people that have it are diagnosed right away but like I said, I am just looking for answers before we just say give him Pediasure the rest of his life so he will gain and he will be fine.

PEPPERDERR

pepperderr · Mar 19, 2009

I think I will call my insurance up and ask them about if they cover the genetic testing. He had a biopsy done for genetic testing to test for the metheylmalonic acidemia and I think after years of it being billed to us over and over and sent probably to collections too, it finally got taken care of. His doctor that sent him for the test was practically 110% sure he had it and felt bad that it wasn't covered. They said they wouldn't cover it because we didn't get prior authorization from the HEAD of the hospital or something first...not his doctor. Some head guy had to approve it first.
 
 As far as his stools, he had some pretty gross ones to begin with but we are thinking it was due to lactose intollerance. When he gets lactaid, they are not so bad. The doctor thinks it is from the milk protien in the Pediasuare I guess but if he doesn't drink Pediasure, he won't gain and will likely lose weight. My other son did have some kind of test done on his stools because they really thought he might have CF too but I guess it turned out to be nothing..as I posted before, he has asthma. They never did that stool test on the 4yo that I know of.
 
 Last night he was fine sleeping but the night before I kept getting up checking on him because his breathing seemed soooo bad. When he had his tongue clipped because he was tongue tied(another thing they tried to do to see if it would help him gain weight), the doctor said he had laryngomalacia where the windpipe can close in or something. He was breathing really horrible after the proceedure and had oxygen right there in the room. They said it was because the stuff they used to numb his tongue probably got to his throat. Anyway, that is what it sounded like the way he was breathing two nights ago. He woke up yesterday and seemed fine so I don't know what was the problem.
 
 It has been amlost 5 years of different tests with no answers. As much as I don't want it to be CF of course, I want to know what is making my son not be able to gain weight. It is not normal to lose 6oz a week as a baby where you are supposed to be gaining and it has just been that way the whole time. He had the vomiting after every feeding but with zantac that went away and he still lost weight. My other son is on Prevacid now or he will throw up just about every night. He was about 5yo when his cough 24/7 started so I am wondering if maybe my 4yo is starting with the same thing only his cough is definitely productive.
 
 Thanks for your input. I know most people that have it are diagnosed right away but like I said, I am just looking for answers before we just say give him Pediasure the rest of his life so he will gain and he will be fine.
 
 PEPPERDERR

Should he be tested again?

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