Grasping at straws

A

Annieo

New member
Where to start? I have a five year old son who has Down syndrome and leukemia. Last fall he spent about one week a month in the hospital with respiratory problems. His pulmonologist finally got him a vibrating vest (we call it the jiggle jacket) and it's been wonderful. He hasn't been hospitalized since we started using it. Sometime last fall (hard to remember when because we were trying to keep him out of the hospital) he started having intermittent diarrhea. When it got worse we finally went to see a GI specialist. Last month he had an upper GI endoscopy and was diagnosed as lactose intolerant. We stopped giving him milk and started giving him lactase enzyme tablets, but the diarrhea only seems to be getting worse. He had a horrible day yesterday (liquid yellow poop on the living room rug) and I ended up in tears on the phone with the GI nurse. We both agreed that something more is going on, but what?!!!

He's been tested for C-diff twice and it was negative both times. We tested his stool for several other things (can't remember what now) and those were negative, too. One test required that the stool be frozen but both times we tried to do this one, the sample somehow thawed before it got to the lab. This test was for pancreatic enzymes. When I looked up info on the test, I was surprised to see that it had something to do with CF. Now I'm wondering if there's a chance he has CF.

I'm sorry for my long winded post, but I'm out of ideas. I belong to two other forums, one for parents of kids with Down syndrome and one for parents of kids with leukemia. What my son is experiencing is not common to kids with DS or kids on chemo. Am I crazy to ask for a CF test? What test should I ask for? Is it significant that of my son's 4 siblings, 2 (both boys) have soft stool? Could all 3 of them have CF, or is it something else?

Thanks for any help you can provide.
 
A

Annieo

New member
Where to start? I have a five year old son who has Down syndrome and leukemia. Last fall he spent about one week a month in the hospital with respiratory problems. His pulmonologist finally got him a vibrating vest (we call it the jiggle jacket) and it's been wonderful. He hasn't been hospitalized since we started using it. Sometime last fall (hard to remember when because we were trying to keep him out of the hospital) he started having intermittent diarrhea. When it got worse we finally went to see a GI specialist. Last month he had an upper GI endoscopy and was diagnosed as lactose intolerant. We stopped giving him milk and started giving him lactase enzyme tablets, but the diarrhea only seems to be getting worse. He had a horrible day yesterday (liquid yellow poop on the living room rug) and I ended up in tears on the phone with the GI nurse. We both agreed that something more is going on, but what?!!!

He's been tested for C-diff twice and it was negative both times. We tested his stool for several other things (can't remember what now) and those were negative, too. One test required that the stool be frozen but both times we tried to do this one, the sample somehow thawed before it got to the lab. This test was for pancreatic enzymes. When I looked up info on the test, I was surprised to see that it had something to do with CF. Now I'm wondering if there's a chance he has CF.

I'm sorry for my long winded post, but I'm out of ideas. I belong to two other forums, one for parents of kids with Down syndrome and one for parents of kids with leukemia. What my son is experiencing is not common to kids with DS or kids on chemo. Am I crazy to ask for a CF test? What test should I ask for? Is it significant that of my son's 4 siblings, 2 (both boys) have soft stool? Could all 3 of them have CF, or is it something else?

Thanks for any help you can provide.
 
A

Annieo

New member
Where to start? I have a five year old son who has Down syndrome and leukemia. Last fall he spent about one week a month in the hospital with respiratory problems. His pulmonologist finally got him a vibrating vest (we call it the jiggle jacket) and it's been wonderful. He hasn't been hospitalized since we started using it. Sometime last fall (hard to remember when because we were trying to keep him out of the hospital) he started having intermittent diarrhea. When it got worse we finally went to see a GI specialist. Last month he had an upper GI endoscopy and was diagnosed as lactose intolerant. We stopped giving him milk and started giving him lactase enzyme tablets, but the diarrhea only seems to be getting worse. He had a horrible day yesterday (liquid yellow poop on the living room rug) and I ended up in tears on the phone with the GI nurse. We both agreed that something more is going on, but what?!!!

He's been tested for C-diff twice and it was negative both times. We tested his stool for several other things (can't remember what now) and those were negative, too. One test required that the stool be frozen but both times we tried to do this one, the sample somehow thawed before it got to the lab. This test was for pancreatic enzymes. When I looked up info on the test, I was surprised to see that it had something to do with CF. Now I'm wondering if there's a chance he has CF.

I'm sorry for my long winded post, but I'm out of ideas. I belong to two other forums, one for parents of kids with Down syndrome and one for parents of kids with leukemia. What my son is experiencing is not common to kids with DS or kids on chemo. Am I crazy to ask for a CF test? What test should I ask for? Is it significant that of my son's 4 siblings, 2 (both boys) have soft stool? Could all 3 of them have CF, or is it something else?

Thanks for any help you can provide.
 
A

Annieo

New member
Where to start? I have a five year old son who has Down syndrome and leukemia. Last fall he spent about one week a month in the hospital with respiratory problems. His pulmonologist finally got him a vibrating vest (we call it the jiggle jacket) and it's been wonderful. He hasn't been hospitalized since we started using it. Sometime last fall (hard to remember when because we were trying to keep him out of the hospital) he started having intermittent diarrhea. When it got worse we finally went to see a GI specialist. Last month he had an upper GI endoscopy and was diagnosed as lactose intolerant. We stopped giving him milk and started giving him lactase enzyme tablets, but the diarrhea only seems to be getting worse. He had a horrible day yesterday (liquid yellow poop on the living room rug) and I ended up in tears on the phone with the GI nurse. We both agreed that something more is going on, but what?!!!

He's been tested for C-diff twice and it was negative both times. We tested his stool for several other things (can't remember what now) and those were negative, too. One test required that the stool be frozen but both times we tried to do this one, the sample somehow thawed before it got to the lab. This test was for pancreatic enzymes. When I looked up info on the test, I was surprised to see that it had something to do with CF. Now I'm wondering if there's a chance he has CF.

I'm sorry for my long winded post, but I'm out of ideas. I belong to two other forums, one for parents of kids with Down syndrome and one for parents of kids with leukemia. What my son is experiencing is not common to kids with DS or kids on chemo. Am I crazy to ask for a CF test? What test should I ask for? Is it significant that of my son's 4 siblings, 2 (both boys) have soft stool? Could all 3 of them have CF, or is it something else?

Thanks for any help you can provide.
 
A

Annieo

New member
Where to start? I have a five year old son who has Down syndrome and leukemia. Last fall he spent about one week a month in the hospital with respiratory problems. His pulmonologist finally got him a vibrating vest (we call it the jiggle jacket) and it's been wonderful. He hasn't been hospitalized since we started using it. Sometime last fall (hard to remember when because we were trying to keep him out of the hospital) he started having intermittent diarrhea. When it got worse we finally went to see a GI specialist. Last month he had an upper GI endoscopy and was diagnosed as lactose intolerant. We stopped giving him milk and started giving him lactase enzyme tablets, but the diarrhea only seems to be getting worse. He had a horrible day yesterday (liquid yellow poop on the living room rug) and I ended up in tears on the phone with the GI nurse. We both agreed that something more is going on, but what?!!!
<br />
<br />He's been tested for C-diff twice and it was negative both times. We tested his stool for several other things (can't remember what now) and those were negative, too. One test required that the stool be frozen but both times we tried to do this one, the sample somehow thawed before it got to the lab. This test was for pancreatic enzymes. When I looked up info on the test, I was surprised to see that it had something to do with CF. Now I'm wondering if there's a chance he has CF.
<br />
<br />I'm sorry for my long winded post, but I'm out of ideas. I belong to two other forums, one for parents of kids with Down syndrome and one for parents of kids with leukemia. What my son is experiencing is not common to kids with DS or kids on chemo. Am I crazy to ask for a CF test? What test should I ask for? Is it significant that of my son's 4 siblings, 2 (both boys) have soft stool? Could all 3 of them have CF, or is it something else?
<br />
<br />Thanks for any help you can provide.
<br />
 
P

purplemartin

New member
Welcome!

Unfortunately, CF testing is usually one of the very last diseases they look for when considering symptoms with disease. But I definitely would not call you crazy for seeking out testing for CF. Bring CF up at your son's next appointment and mention you would like to rule CF out due to his past and present symptoms. Please just make sure that testing is done at accredited CF clinic and push hard for the full Amybry panel, search ambry on this site and you will see why.

As far as your other children go, no there bowel movements are not significant in ruling out CF. Many have several children and only one is affected by the disease.

I wish your family the best and if by chance he does have CF, you will find a great deal of support and advice here on the boards!

Best wishes for your son and your family!
 
P

purplemartin

New member
Welcome!

Unfortunately, CF testing is usually one of the very last diseases they look for when considering symptoms with disease. But I definitely would not call you crazy for seeking out testing for CF. Bring CF up at your son's next appointment and mention you would like to rule CF out due to his past and present symptoms. Please just make sure that testing is done at accredited CF clinic and push hard for the full Amybry panel, search ambry on this site and you will see why.

As far as your other children go, no there bowel movements are not significant in ruling out CF. Many have several children and only one is affected by the disease.

I wish your family the best and if by chance he does have CF, you will find a great deal of support and advice here on the boards!

Best wishes for your son and your family!
 
P

purplemartin

New member
Welcome!

Unfortunately, CF testing is usually one of the very last diseases they look for when considering symptoms with disease. But I definitely would not call you crazy for seeking out testing for CF. Bring CF up at your son's next appointment and mention you would like to rule CF out due to his past and present symptoms. Please just make sure that testing is done at accredited CF clinic and push hard for the full Amybry panel, search ambry on this site and you will see why.

As far as your other children go, no there bowel movements are not significant in ruling out CF. Many have several children and only one is affected by the disease.

I wish your family the best and if by chance he does have CF, you will find a great deal of support and advice here on the boards!

Best wishes for your son and your family!
 
P

purplemartin

New member
Welcome!

Unfortunately, CF testing is usually one of the very last diseases they look for when considering symptoms with disease. But I definitely would not call you crazy for seeking out testing for CF. Bring CF up at your son's next appointment and mention you would like to rule CF out due to his past and present symptoms. Please just make sure that testing is done at accredited CF clinic and push hard for the full Amybry panel, search ambry on this site and you will see why.

As far as your other children go, no there bowel movements are not significant in ruling out CF. Many have several children and only one is affected by the disease.

I wish your family the best and if by chance he does have CF, you will find a great deal of support and advice here on the boards!

Best wishes for your son and your family!
 
P

purplemartin

New member
Welcome!
<br />
<br />Unfortunately, CF testing is usually one of the very last diseases they look for when considering symptoms with disease. But I definitely would not call you crazy for seeking out testing for CF. Bring CF up at your son's next appointment and mention you would like to rule CF out due to his past and present symptoms. Please just make sure that testing is done at accredited CF clinic and push hard for the full Amybry panel, search ambry on this site and you will see why.
<br />
<br />As far as your other children go, no there bowel movements are not significant in ruling out CF. Many have several children and only one is affected by the disease.
<br />
<br />I wish your family the best and if by chance he does have CF, you will find a great deal of support and advice here on the boards!
<br />
<br />Best wishes for your son and your family!
<br />
 
J

JennyCoulon

New member
I would say that it is worth a try. If you are to your wits end and it sounds like you are I would at least request it. I know that was a huge thing with my soon to be 3 year old Tucker. I have an 8 year old with CF and when Tucker started having diarhea after everytime he ate I knew that he had CF. We of course had to wait for the test results b/c they said if we started enzymes and he didn't have CF that could be harmful. After he was home a week I kept on them about this and that if they didn't start him on ezymes he would continue to loss weight and then we would have bigger problems. As you can guess that the test came back positive. I would say you can't hurt anything by having them test and even if the diagnoses is positive you know what you are dealing with. Hope this helps.
 
J

JennyCoulon

New member
I would say that it is worth a try. If you are to your wits end and it sounds like you are I would at least request it. I know that was a huge thing with my soon to be 3 year old Tucker. I have an 8 year old with CF and when Tucker started having diarhea after everytime he ate I knew that he had CF. We of course had to wait for the test results b/c they said if we started enzymes and he didn't have CF that could be harmful. After he was home a week I kept on them about this and that if they didn't start him on ezymes he would continue to loss weight and then we would have bigger problems. As you can guess that the test came back positive. I would say you can't hurt anything by having them test and even if the diagnoses is positive you know what you are dealing with. Hope this helps.
 
J

JennyCoulon

New member
I would say that it is worth a try. If you are to your wits end and it sounds like you are I would at least request it. I know that was a huge thing with my soon to be 3 year old Tucker. I have an 8 year old with CF and when Tucker started having diarhea after everytime he ate I knew that he had CF. We of course had to wait for the test results b/c they said if we started enzymes and he didn't have CF that could be harmful. After he was home a week I kept on them about this and that if they didn't start him on ezymes he would continue to loss weight and then we would have bigger problems. As you can guess that the test came back positive. I would say you can't hurt anything by having them test and even if the diagnoses is positive you know what you are dealing with. Hope this helps.
 
J

JennyCoulon

New member
I would say that it is worth a try. If you are to your wits end and it sounds like you are I would at least request it. I know that was a huge thing with my soon to be 3 year old Tucker. I have an 8 year old with CF and when Tucker started having diarhea after everytime he ate I knew that he had CF. We of course had to wait for the test results b/c they said if we started enzymes and he didn't have CF that could be harmful. After he was home a week I kept on them about this and that if they didn't start him on ezymes he would continue to loss weight and then we would have bigger problems. As you can guess that the test came back positive. I would say you can't hurt anything by having them test and even if the diagnoses is positive you know what you are dealing with. Hope this helps.
 
J

JennyCoulon

New member
I would say that it is worth a try. If you are to your wits end and it sounds like you are I would at least request it. I know that was a huge thing with my soon to be 3 year old Tucker. I have an 8 year old with CF and when Tucker started having diarhea after everytime he ate I knew that he had CF. We of course had to wait for the test results b/c they said if we started enzymes and he didn't have CF that could be harmful. After he was home a week I kept on them about this and that if they didn't start him on ezymes he would continue to loss weight and then we would have bigger problems. As you can guess that the test came back positive. I would say you can't hurt anything by having them test and even if the diagnoses is positive you know what you are dealing with. Hope this helps.
 
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