Scared for my son

mlbsmom · Sep 17, 2007

My son is 5 and is going to have a sweat test done Wednesday.
He has had bowel problems since about 1 year old alternating between constipation and diarrhea. The bowel movements have always been very smelly and sometimes mucousy but not really greasy.
He was diagnosed as having encopresis or fecal soiling for about 2 years now. He has never been fully bowel potty trained and only began peeing in the toilet about 6 months ago. He takes Miralax daily.
He has had a lot of ear infections and frequent colds which have led to pneumonia the past 2 winters. He almost always has a lingering cough after a cold and vomits from the severity of the cough.
He went to the doctor today, a new one (our insurance changed and wouldn't accept the old doctor) and I swear I could almost see the light go off in his head.
The look on his face was like" I think someone has missed something with this kid"
He is concerned that all this time it might have been cf and so had ordered the sweat test.
I am a little concerned that we will have to go to an unaccredited facility due to being on Medicaid, they wont pay otherwise.
Just feeling kind of scared for him right now and was wondering who else can relate to having a child with similar symptoms esp. the encopresis.
I just can't believe that his GI specialist (whom he sees for the encopresis) never suggested we do the sweat test!
Really feeling sad and overwhelmed right now as constantly changing a 5 year olds diapers is challenging enough and now to wonder about this as my husband is out of town!
Sorry dont mean to rant but I have anxiety and depression myself and this has been a big blow today, I know test is not positive but just the thought is really stressing me!

mlbsmom · Sep 17, 2007

My son is 5 and is going to have a sweat test done Wednesday.
He has had bowel problems since about 1 year old alternating between constipation and diarrhea. The bowel movements have always been very smelly and sometimes mucousy but not really greasy.
He was diagnosed as having encopresis or fecal soiling for about 2 years now. He has never been fully bowel potty trained and only began peeing in the toilet about 6 months ago. He takes Miralax daily.
He has had a lot of ear infections and frequent colds which have led to pneumonia the past 2 winters. He almost always has a lingering cough after a cold and vomits from the severity of the cough.
He went to the doctor today, a new one (our insurance changed and wouldn't accept the old doctor) and I swear I could almost see the light go off in his head.
The look on his face was like" I think someone has missed something with this kid"
He is concerned that all this time it might have been cf and so had ordered the sweat test.
I am a little concerned that we will have to go to an unaccredited facility due to being on Medicaid, they wont pay otherwise.
Just feeling kind of scared for him right now and was wondering who else can relate to having a child with similar symptoms esp. the encopresis.
I just can't believe that his GI specialist (whom he sees for the encopresis) never suggested we do the sweat test!
Really feeling sad and overwhelmed right now as constantly changing a 5 year olds diapers is challenging enough and now to wonder about this as my husband is out of town!
Sorry dont mean to rant but I have anxiety and depression myself and this has been a big blow today, I know test is not positive but just the thought is really stressing me!

mlbsmom · Sep 17, 2007

My son is 5 and is going to have a sweat test done Wednesday.
He has had bowel problems since about 1 year old alternating between constipation and diarrhea. The bowel movements have always been very smelly and sometimes mucousy but not really greasy.
He was diagnosed as having encopresis or fecal soiling for about 2 years now. He has never been fully bowel potty trained and only began peeing in the toilet about 6 months ago. He takes Miralax daily.
He has had a lot of ear infections and frequent colds which have led to pneumonia the past 2 winters. He almost always has a lingering cough after a cold and vomits from the severity of the cough.
He went to the doctor today, a new one (our insurance changed and wouldn't accept the old doctor) and I swear I could almost see the light go off in his head.
The look on his face was like" I think someone has missed something with this kid"
He is concerned that all this time it might have been cf and so had ordered the sweat test.
I am a little concerned that we will have to go to an unaccredited facility due to being on Medicaid, they wont pay otherwise.
Just feeling kind of scared for him right now and was wondering who else can relate to having a child with similar symptoms esp. the encopresis.
I just can't believe that his GI specialist (whom he sees for the encopresis) never suggested we do the sweat test!
Really feeling sad and overwhelmed right now as constantly changing a 5 year olds diapers is challenging enough and now to wonder about this as my husband is out of town!
Sorry dont mean to rant but I have anxiety and depression myself and this has been a big blow today, I know test is not positive but just the thought is really stressing me!

mlbsmom · Sep 17, 2007

My son is 5 and is going to have a sweat test done Wednesday.
He has had bowel problems since about 1 year old alternating between constipation and diarrhea. The bowel movements have always been very smelly and sometimes mucousy but not really greasy.
He was diagnosed as having encopresis or fecal soiling for about 2 years now. He has never been fully bowel potty trained and only began peeing in the toilet about 6 months ago. He takes Miralax daily.
He has had a lot of ear infections and frequent colds which have led to pneumonia the past 2 winters. He almost always has a lingering cough after a cold and vomits from the severity of the cough.
He went to the doctor today, a new one (our insurance changed and wouldn't accept the old doctor) and I swear I could almost see the light go off in his head.
The look on his face was like" I think someone has missed something with this kid"
He is concerned that all this time it might have been cf and so had ordered the sweat test.
I am a little concerned that we will have to go to an unaccredited facility due to being on Medicaid, they wont pay otherwise.
Just feeling kind of scared for him right now and was wondering who else can relate to having a child with similar symptoms esp. the encopresis.
I just can't believe that his GI specialist (whom he sees for the encopresis) never suggested we do the sweat test!
Really feeling sad and overwhelmed right now as constantly changing a 5 year olds diapers is challenging enough and now to wonder about this as my husband is out of town!
Sorry dont mean to rant but I have anxiety and depression myself and this has been a big blow today, I know test is not positive but just the thought is really stressing me!

mlbsmom · Sep 17, 2007

My son is 5 and is going to have a sweat test done Wednesday.
He has had bowel problems since about 1 year old alternating between constipation and diarrhea. The bowel movements have always been very smelly and sometimes mucousy but not really greasy.
He was diagnosed as having encopresis or fecal soiling for about 2 years now. He has never been fully bowel potty trained and only began peeing in the toilet about 6 months ago. He takes Miralax daily.
He has had a lot of ear infections and frequent colds which have led to pneumonia the past 2 winters. He almost always has a lingering cough after a cold and vomits from the severity of the cough.
He went to the doctor today, a new one (our insurance changed and wouldn't accept the old doctor) and I swear I could almost see the light go off in his head.
The look on his face was like" I think someone has missed something with this kid"
He is concerned that all this time it might have been cf and so had ordered the sweat test.
I am a little concerned that we will have to go to an unaccredited facility due to being on Medicaid, they wont pay otherwise.
Just feeling kind of scared for him right now and was wondering who else can relate to having a child with similar symptoms esp. the encopresis.
I just can't believe that his GI specialist (whom he sees for the encopresis) never suggested we do the sweat test!
Really feeling sad and overwhelmed right now as constantly changing a 5 year olds diapers is challenging enough and now to wonder about this as my husband is out of town!
Sorry dont mean to rant but I have anxiety and depression myself and this has been a big blow today, I know test is not positive but just the thought is really stressing me!

Mommafirst · Sep 18, 2007

While I don't have a child with the same symptoms, I can relate to you as a mom being scared. I wish there were words of comfort for you. Diagnosis is a hard road and very emotional. I hope you get a no-CF result, but if he does have CF, while it will be difficult you can also start to get him the kind of care that may make a difference.

Mommafirst · Sep 18, 2007

While I don't have a child with the same symptoms, I can relate to you as a mom being scared. I wish there were words of comfort for you. Diagnosis is a hard road and very emotional. I hope you get a no-CF result, but if he does have CF, while it will be difficult you can also start to get him the kind of care that may make a difference.

Mommafirst · Sep 18, 2007

While I don't have a child with the same symptoms, I can relate to you as a mom being scared. I wish there were words of comfort for you. Diagnosis is a hard road and very emotional. I hope you get a no-CF result, but if he does have CF, while it will be difficult you can also start to get him the kind of care that may make a difference.

Mommafirst · Sep 18, 2007

While I don't have a child with the same symptoms, I can relate to you as a mom being scared. I wish there were words of comfort for you. Diagnosis is a hard road and very emotional. I hope you get a no-CF result, but if he does have CF, while it will be difficult you can also start to get him the kind of care that may make a difference.

Mommafirst · Sep 18, 2007

While I don't have a child with the same symptoms, I can relate to you as a mom being scared. I wish there were words of comfort for you. Diagnosis is a hard road and very emotional. I hope you get a no-CF result, but if he does have CF, while it will be difficult you can also start to get him the kind of care that may make a difference.

Alyssa · Sep 18, 2007

I wish you well on Wednesday. Hopefully you will get a negative number and you can rule out CF as a possibility.

If it is CF, I'm glad you have found a doctor who picked up on it and is now willing to test for it. My daughter was misdiagnosed for 8 years because nobody thought it could be CF and because her sweat test is in the "normal" range. Please read my blog page (link at the bottom) for more details about sweat test results.

Some things to keep in mind after you get your results. Many people with CF test out in the high normal range and need to get confirmation with genetic testing. If your child tests out in the 20's or 30's (still within normal range) please push for full genetic testing -- too many people on here have sweat test results in the 20's and 30's. If the results come back in the single digit (like 7 or 9) you are most likely in the clear.

I'm sorry it's a tough time for you -- most of us have been there - if you need to vent feel free to do so. If I can answer any more questions for you please post them here or send me a private message through this site.

Alyssa · Sep 18, 2007

I wish you well on Wednesday. Hopefully you will get a negative number and you can rule out CF as a possibility.

If it is CF, I'm glad you have found a doctor who picked up on it and is now willing to test for it. My daughter was misdiagnosed for 8 years because nobody thought it could be CF and because her sweat test is in the "normal" range. Please read my blog page (link at the bottom) for more details about sweat test results.

Some things to keep in mind after you get your results. Many people with CF test out in the high normal range and need to get confirmation with genetic testing. If your child tests out in the 20's or 30's (still within normal range) please push for full genetic testing -- too many people on here have sweat test results in the 20's and 30's. If the results come back in the single digit (like 7 or 9) you are most likely in the clear.

I'm sorry it's a tough time for you -- most of us have been there - if you need to vent feel free to do so. If I can answer any more questions for you please post them here or send me a private message through this site.

Alyssa · Sep 18, 2007

I wish you well on Wednesday. Hopefully you will get a negative number and you can rule out CF as a possibility.

If it is CF, I'm glad you have found a doctor who picked up on it and is now willing to test for it. My daughter was misdiagnosed for 8 years because nobody thought it could be CF and because her sweat test is in the "normal" range. Please read my blog page (link at the bottom) for more details about sweat test results.

Some things to keep in mind after you get your results. Many people with CF test out in the high normal range and need to get confirmation with genetic testing. If your child tests out in the 20's or 30's (still within normal range) please push for full genetic testing -- too many people on here have sweat test results in the 20's and 30's. If the results come back in the single digit (like 7 or 9) you are most likely in the clear.

I'm sorry it's a tough time for you -- most of us have been there - if you need to vent feel free to do so. If I can answer any more questions for you please post them here or send me a private message through this site.

Alyssa · Sep 18, 2007

I wish you well on Wednesday. Hopefully you will get a negative number and you can rule out CF as a possibility.

If it is CF, I'm glad you have found a doctor who picked up on it and is now willing to test for it. My daughter was misdiagnosed for 8 years because nobody thought it could be CF and because her sweat test is in the "normal" range. Please read my blog page (link at the bottom) for more details about sweat test results.

Some things to keep in mind after you get your results. Many people with CF test out in the high normal range and need to get confirmation with genetic testing. If your child tests out in the 20's or 30's (still within normal range) please push for full genetic testing -- too many people on here have sweat test results in the 20's and 30's. If the results come back in the single digit (like 7 or 9) you are most likely in the clear.

I'm sorry it's a tough time for you -- most of us have been there - if you need to vent feel free to do so. If I can answer any more questions for you please post them here or send me a private message through this site.

Alyssa · Sep 18, 2007

I wish you well on Wednesday. Hopefully you will get a negative number and you can rule out CF as a possibility.

If it is CF, I'm glad you have found a doctor who picked up on it and is now willing to test for it. My daughter was misdiagnosed for 8 years because nobody thought it could be CF and because her sweat test is in the "normal" range. Please read my blog page (link at the bottom) for more details about sweat test results.

Some things to keep in mind after you get your results. Many people with CF test out in the high normal range and need to get confirmation with genetic testing. If your child tests out in the 20's or 30's (still within normal range) please push for full genetic testing -- too many people on here have sweat test results in the 20's and 30's. If the results come back in the single digit (like 7 or 9) you are most likely in the clear.

I'm sorry it's a tough time for you -- most of us have been there - if you need to vent feel free to do so. If I can answer any more questions for you please post them here or send me a private message through this site.

mlbsmom · Sep 19, 2007