Newbie.. need advise

M

mommieof2

New member
Hello to everyone. let me introduce myself. My name is Amanda and I am a single parent of two wonderful little blessings. My son being the younger of the two has had health problems ince in the womb. I know this post my be long but please bare with me. My son began with having kidney problems, at age four months he went in for surgery. They took out 60% of his R kidney and one ureter (duplex on right). He also has kidney reflux on the R side. Still to this day, the reflux is still there but no major probs with the little bit of kidney that he has. My son is now 17 months old and he has been in and out of the hospital and doctors office for the last four-five months. Before that, he was in for roseola and milk allergy. He has had now reoccuring RSV as well as bronchitis. He has had diahrreea for almost three months and litterally it is watery. Now my son has been on and off of antibiotics his whole life. He has also not been able to gain weight and keep it on for about 7 months now. So, this alst trip to the hopsital was because his lips were purpleand skin was pale.. and this was the fourth time within the last few weeks, each time getting longer (2-3 mins, 5 mins, about 7 mins, and now about 15 mins). GI doc tested him thinking that it was celiac disease yet all test came back fine. While we were there the test they ran can back fine although his EKG came back with a small abnormal part but the cardio said it was okay. Finally someone stated that he needed a sweat chloride test done. I was not informed why or what this was about until I came home and found out by looking it up on the web. We go tomorrow for his test. I am confused and completely stressed out. I do not think that CF is in my family yet guess we could have been carriers or something??? Please if you have any information or comments/ suggestions, ect.. i would love to find out what you have to say. Thank you and hope everyone has a great new year <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
M

mommieof2

New member
Hello to everyone. let me introduce myself. My name is Amanda and I am a single parent of two wonderful little blessings. My son being the younger of the two has had health problems ince in the womb. I know this post my be long but please bare with me. My son began with having kidney problems, at age four months he went in for surgery. They took out 60% of his R kidney and one ureter (duplex on right). He also has kidney reflux on the R side. Still to this day, the reflux is still there but no major probs with the little bit of kidney that he has. My son is now 17 months old and he has been in and out of the hospital and doctors office for the last four-five months. Before that, he was in for roseola and milk allergy. He has had now reoccuring RSV as well as bronchitis. He has had diahrreea for almost three months and litterally it is watery. Now my son has been on and off of antibiotics his whole life. He has also not been able to gain weight and keep it on for about 7 months now. So, this alst trip to the hopsital was because his lips were purpleand skin was pale.. and this was the fourth time within the last few weeks, each time getting longer (2-3 mins, 5 mins, about 7 mins, and now about 15 mins). GI doc tested him thinking that it was celiac disease yet all test came back fine. While we were there the test they ran can back fine although his EKG came back with a small abnormal part but the cardio said it was okay. Finally someone stated that he needed a sweat chloride test done. I was not informed why or what this was about until I came home and found out by looking it up on the web. We go tomorrow for his test. I am confused and completely stressed out. I do not think that CF is in my family yet guess we could have been carriers or something??? Please if you have any information or comments/ suggestions, ect.. i would love to find out what you have to say. Thank you and hope everyone has a great new year <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
M

mommieof2

New member
Hello to everyone. let me introduce myself. My name is Amanda and I am a single parent of two wonderful little blessings. My son being the younger of the two has had health problems ince in the womb. I know this post my be long but please bare with me. My son began with having kidney problems, at age four months he went in for surgery. They took out 60% of his R kidney and one ureter (duplex on right). He also has kidney reflux on the R side. Still to this day, the reflux is still there but no major probs with the little bit of kidney that he has. My son is now 17 months old and he has been in and out of the hospital and doctors office for the last four-five months. Before that, he was in for roseola and milk allergy. He has had now reoccuring RSV as well as bronchitis. He has had diahrreea for almost three months and litterally it is watery. Now my son has been on and off of antibiotics his whole life. He has also not been able to gain weight and keep it on for about 7 months now. So, this alst trip to the hopsital was because his lips were purpleand skin was pale.. and this was the fourth time within the last few weeks, each time getting longer (2-3 mins, 5 mins, about 7 mins, and now about 15 mins). GI doc tested him thinking that it was celiac disease yet all test came back fine. While we were there the test they ran can back fine although his EKG came back with a small abnormal part but the cardio said it was okay. Finally someone stated that he needed a sweat chloride test done. I was not informed why or what this was about until I came home and found out by looking it up on the web. We go tomorrow for his test. I am confused and completely stressed out. I do not think that CF is in my family yet guess we could have been carriers or something??? Please if you have any information or comments/ suggestions, ect.. i would love to find out what you have to say. Thank you and hope everyone has a great new year <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
J

JazzysMom

New member
WOW you have dealt with a lot. First of all a good # of cf diagnoses have no known family history. From the diahrea & the purple skin are potential signs of CF. The fact that they tested for celiac also indicates there are many similiar symptoms to CF. I dont believe his other problems with the kidneys etc are related unless he turns out to have a connection of sorts. It sounds like you definitely need some answers to help your little one & although I dont wish for a positive dx at least you would have something to say is the problem. Good Luck & keep us updated!
 
J

JazzysMom

New member
WOW you have dealt with a lot. First of all a good # of cf diagnoses have no known family history. From the diahrea & the purple skin are potential signs of CF. The fact that they tested for celiac also indicates there are many similiar symptoms to CF. I dont believe his other problems with the kidneys etc are related unless he turns out to have a connection of sorts. It sounds like you definitely need some answers to help your little one & although I dont wish for a positive dx at least you would have something to say is the problem. Good Luck & keep us updated!
 
J

JazzysMom

New member
WOW you have dealt with a lot. First of all a good # of cf diagnoses have no known family history. From the diahrea & the purple skin are potential signs of CF. The fact that they tested for celiac also indicates there are many similiar symptoms to CF. I dont believe his other problems with the kidneys etc are related unless he turns out to have a connection of sorts. It sounds like you definitely need some answers to help your little one & although I dont wish for a positive dx at least you would have something to say is the problem. Good Luck & keep us updated!
 
A

Alyssa

New member
Welcome Amanda,

Yes, it sounds like a good idea to test your son for CF. If you get the sweat test done tomorrow, chances are you will have an answer tomorrow too. (not always, but often time you can find out the results in just a couple of hours.)

Just want to let you know sweat tests are a good place to start but they can be inconclusive. If the numbers are anywhere near the borderline area (30 or above) I would continue to ask for full genetic testing. If you have the time, read my blog page for info about sweat testing.

Many people have no family history of CF -- yes, each parent needs to carry one CF gene, then give off that gene for the pregnancy. If you and your husband are both carriers, each pregnancy has a 1 in 4 chance (or 25%) chance of getting both CF genes and therefore having CF.

Best wishes -- keep us posted and let us know if you have any more questions.
 
A

Alyssa

New member
Welcome Amanda,

Yes, it sounds like a good idea to test your son for CF. If you get the sweat test done tomorrow, chances are you will have an answer tomorrow too. (not always, but often time you can find out the results in just a couple of hours.)

Just want to let you know sweat tests are a good place to start but they can be inconclusive. If the numbers are anywhere near the borderline area (30 or above) I would continue to ask for full genetic testing. If you have the time, read my blog page for info about sweat testing.

Many people have no family history of CF -- yes, each parent needs to carry one CF gene, then give off that gene for the pregnancy. If you and your husband are both carriers, each pregnancy has a 1 in 4 chance (or 25%) chance of getting both CF genes and therefore having CF.

Best wishes -- keep us posted and let us know if you have any more questions.
 
A

Alyssa

New member
Welcome Amanda,

Yes, it sounds like a good idea to test your son for CF. If you get the sweat test done tomorrow, chances are you will have an answer tomorrow too. (not always, but often time you can find out the results in just a couple of hours.)

Just want to let you know sweat tests are a good place to start but they can be inconclusive. If the numbers are anywhere near the borderline area (30 or above) I would continue to ask for full genetic testing. If you have the time, read my blog page for info about sweat testing.

Many people have no family history of CF -- yes, each parent needs to carry one CF gene, then give off that gene for the pregnancy. If you and your husband are both carriers, each pregnancy has a 1 in 4 chance (or 25%) chance of getting both CF genes and therefore having CF.

Best wishes -- keep us posted and let us know if you have any more questions.
 
M

mommieof2

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">Well, we went for the test this morning which was a whole hassel with the insurance company. After the test, we were told that the results would be ready by 3pm. So, after calling and finding out that results will not be ready until tomorrow morning.. I am stressed and depressed. Please keep us in your prayers tonight and i will update after the phone call in the morning. Thank you all for the support and prayers <img src="">

Amanda
 
M

mommieof2

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">Well, we went for the test this morning which was a whole hassel with the insurance company. After the test, we were told that the results would be ready by 3pm. So, after calling and finding out that results will not be ready until tomorrow morning.. I am stressed and depressed. Please keep us in your prayers tonight and i will update after the phone call in the morning. Thank you all for the support and prayers <img src="">

Amanda
 
M

mommieof2

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">Well, we went for the test this morning which was a whole hassel with the insurance company. After the test, we were told that the results would be ready by 3pm. So, after calling and finding out that results will not be ready until tomorrow morning.. I am stressed and depressed. Please keep us in your prayers tonight and i will update after the phone call in the morning. Thank you all for the support and prayers <img src="">

Amanda
 
J

JRPandTJP

New member
Amanda, we're thinking of you. I agree with Alsyssa in pushing for more testing if sweat test is borderline or if you have a mother's intuition about it being CF. What you are discribing is very in line with CF. If he is not positive it will be one thing to cross off your list...if he is you will be able to get him the help and therapies he needs to be healthier. You can begin rebuilding his system and get him back on track.

We are here for you if it is positive and can answer whatever questions you should have. Of course, it goes without saying we hope for a negative. Hang in there.

Warmly,
 
J

JRPandTJP

New member
Amanda, we're thinking of you. I agree with Alsyssa in pushing for more testing if sweat test is borderline or if you have a mother's intuition about it being CF. What you are discribing is very in line with CF. If he is not positive it will be one thing to cross off your list...if he is you will be able to get him the help and therapies he needs to be healthier. You can begin rebuilding his system and get him back on track.

We are here for you if it is positive and can answer whatever questions you should have. Of course, it goes without saying we hope for a negative. Hang in there.

Warmly,
 
J

JRPandTJP

New member
Amanda, we're thinking of you. I agree with Alsyssa in pushing for more testing if sweat test is borderline or if you have a mother's intuition about it being CF. What you are discribing is very in line with CF. If he is not positive it will be one thing to cross off your list...if he is you will be able to get him the help and therapies he needs to be healthier. You can begin rebuilding his system and get him back on track.

We are here for you if it is positive and can answer whatever questions you should have. Of course, it goes without saying we hope for a negative. Hang in there.

Warmly,
 
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