Questions for anyone who can help PLEASE!

mandamarie · May 5, 2008

Ok, so I have been reading these forums over the weekend and I decided to finally join. My son is 4.5 years old and has had a ton of medical problems. He was 6.5 weeks early and since then it has been one thing after the other. When he was 6 months old we were sent to Denver Childrens (11 hrs away) for some testing. They did an Upper GI to see if he had reflux asperating to his lungs, which he didn't and a sweat test which they said was negative. (We went because of multiple pnemonias, bronchiolitis and RSV)At that time I really didn't know to much about the testing and so forth. Fast forward to now and he has had non-stop sinus infections and upper respritory infections. One of his DRs have diagnosed Asthma, allergies, nose polyps and immune deficiency. (His IgG was low but he had an injection and now doing fine with that)We went to his specialist for the above on Wednesday and she asked if he had been tested for CF by blood/genetic testing. He has not, so she is doing the testing now wich was sent away to Mayo I believe. She also said there was something wrong with the Platelets in his blood and is testing those. I know some about CF because my cousin has it, but for me it is hard to ask them questions. How long does it usually take to get the results back? What are some good questions to ask if his test comes out positive? Now that I look at his symptoms and everything I have read, it makes me think more and more about him possibly having CF so if it is Negative, what are some questions to ask? I'm just at a loss here and I'm wanting to be informed before I get results so I can be prepared to ask the proper questions to get things moving quicker.
Sorry this is so long, but I had to get it off my chest and ask for help somewhere. This is where I turned. So any and all advice and input would be greatly appreciated!!

mandamarie · May 5, 2008

Ok, so I have been reading these forums over the weekend and I decided to finally join. My son is 4.5 years old and has had a ton of medical problems. He was 6.5 weeks early and since then it has been one thing after the other. When he was 6 months old we were sent to Denver Childrens (11 hrs away) for some testing. They did an Upper GI to see if he had reflux asperating to his lungs, which he didn't and a sweat test which they said was negative. (We went because of multiple pnemonias, bronchiolitis and RSV)At that time I really didn't know to much about the testing and so forth. Fast forward to now and he has had non-stop sinus infections and upper respritory infections. One of his DRs have diagnosed Asthma, allergies, nose polyps and immune deficiency. (His IgG was low but he had an injection and now doing fine with that)We went to his specialist for the above on Wednesday and she asked if he had been tested for CF by blood/genetic testing. He has not, so she is doing the testing now wich was sent away to Mayo I believe. She also said there was something wrong with the Platelets in his blood and is testing those. I know some about CF because my cousin has it, but for me it is hard to ask them questions. How long does it usually take to get the results back? What are some good questions to ask if his test comes out positive? Now that I look at his symptoms and everything I have read, it makes me think more and more about him possibly having CF so if it is Negative, what are some questions to ask? I'm just at a loss here and I'm wanting to be informed before I get results so I can be prepared to ask the proper questions to get things moving quicker.
Sorry this is so long, but I had to get it off my chest and ask for help somewhere. This is where I turned. So any and all advice and input would be greatly appreciated!!

mandamarie · May 5, 2008

Ok, so I have been reading these forums over the weekend and I decided to finally join. My son is 4.5 years old and has had a ton of medical problems. He was 6.5 weeks early and since then it has been one thing after the other. When he was 6 months old we were sent to Denver Childrens (11 hrs away) for some testing. They did an Upper GI to see if he had reflux asperating to his lungs, which he didn't and a sweat test which they said was negative. (We went because of multiple pnemonias, bronchiolitis and RSV)At that time I really didn't know to much about the testing and so forth. Fast forward to now and he has had non-stop sinus infections and upper respritory infections. One of his DRs have diagnosed Asthma, allergies, nose polyps and immune deficiency. (His IgG was low but he had an injection and now doing fine with that)We went to his specialist for the above on Wednesday and she asked if he had been tested for CF by blood/genetic testing. He has not, so she is doing the testing now wich was sent away to Mayo I believe. She also said there was something wrong with the Platelets in his blood and is testing those. I know some about CF because my cousin has it, but for me it is hard to ask them questions. How long does it usually take to get the results back? What are some good questions to ask if his test comes out positive? Now that I look at his symptoms and everything I have read, it makes me think more and more about him possibly having CF so if it is Negative, what are some questions to ask? I'm just at a loss here and I'm wanting to be informed before I get results so I can be prepared to ask the proper questions to get things moving quicker.
Sorry this is so long, but I had to get it off my chest and ask for help somewhere. This is where I turned. So any and all advice and input would be greatly appreciated!!

mandamarie · May 5, 2008

Ok, so I have been reading these forums over the weekend and I decided to finally join. My son is 4.5 years old and has had a ton of medical problems. He was 6.5 weeks early and since then it has been one thing after the other. When he was 6 months old we were sent to Denver Childrens (11 hrs away) for some testing. They did an Upper GI to see if he had reflux asperating to his lungs, which he didn't and a sweat test which they said was negative. (We went because of multiple pnemonias, bronchiolitis and RSV)At that time I really didn't know to much about the testing and so forth. Fast forward to now and he has had non-stop sinus infections and upper respritory infections. One of his DRs have diagnosed Asthma, allergies, nose polyps and immune deficiency. (His IgG was low but he had an injection and now doing fine with that)We went to his specialist for the above on Wednesday and she asked if he had been tested for CF by blood/genetic testing. He has not, so she is doing the testing now wich was sent away to Mayo I believe. She also said there was something wrong with the Platelets in his blood and is testing those. I know some about CF because my cousin has it, but for me it is hard to ask them questions. How long does it usually take to get the results back? What are some good questions to ask if his test comes out positive? Now that I look at his symptoms and everything I have read, it makes me think more and more about him possibly having CF so if it is Negative, what are some questions to ask? I'm just at a loss here and I'm wanting to be informed before I get results so I can be prepared to ask the proper questions to get things moving quicker.
Sorry this is so long, but I had to get it off my chest and ask for help somewhere. This is where I turned. So any and all advice and input would be greatly appreciated!!

mandamarie · May 5, 2008

Ok, so I have been reading these forums over the weekend and I decided to finally join. My son is 4.5 years old and has had a ton of medical problems. He was 6.5 weeks early and since then it has been one thing after the other. When he was 6 months old we were sent to Denver Childrens (11 hrs away) for some testing. They did an Upper GI to see if he had reflux asperating to his lungs, which he didn't and a sweat test which they said was negative. (We went because of multiple pnemonias, bronchiolitis and RSV)At that time I really didn't know to much about the testing and so forth. Fast forward to now and he has had non-stop sinus infections and upper respritory infections. One of his DRs have diagnosed Asthma, allergies, nose polyps and immune deficiency. (His IgG was low but he had an injection and now doing fine with that)We went to his specialist for the above on Wednesday and she asked if he had been tested for CF by blood/genetic testing. He has not, so she is doing the testing now wich was sent away to Mayo I believe. She also said there was something wrong with the Platelets in his blood and is testing those. I know some about CF because my cousin has it, but for me it is hard to ask them questions. How long does it usually take to get the results back? What are some good questions to ask if his test comes out positive? Now that I look at his symptoms and everything I have read, it makes me think more and more about him possibly having CF so if it is Negative, what are some questions to ask? I'm just at a loss here and I'm wanting to be informed before I get results so I can be prepared to ask the proper questions to get things moving quicker.
 Sorry this is so long, but I had to get it off my chest and ask for help somewhere. This is where I turned. So any and all advice and input would be greatly appreciated!!

cabgodfrey · May 5, 2008

Could it be that his premature birth has caused him to have a weaker immune system and he is just getting a rough start in life? CF causes loose stools (for most), either really hungry or never hungry, salty skin (place your tongue on the bottom of his foot and see if it is very salty tasting), belly aches (for most), lost of upper and lower respiratory infections, constipation and/or diarrhea. These are the symptoms he would be having most likely if he has CF. But, if his immune system is weak, he could easily have all of the upper/lower respiratory problems you mentioned. Premies often have trouble with health because of their early start. I believe the bloodwork for CF takes about 2 weeks. I hope this helps.

cabgodfrey · May 5, 2008

Could it be that his premature birth has caused him to have a weaker immune system and he is just getting a rough start in life? CF causes loose stools (for most), either really hungry or never hungry, salty skin (place your tongue on the bottom of his foot and see if it is very salty tasting), belly aches (for most), lost of upper and lower respiratory infections, constipation and/or diarrhea. These are the symptoms he would be having most likely if he has CF. But, if his immune system is weak, he could easily have all of the upper/lower respiratory problems you mentioned. Premies often have trouble with health because of their early start. I believe the bloodwork for CF takes about 2 weeks. I hope this helps.

cabgodfrey · May 5, 2008

Could it be that his premature birth has caused him to have a weaker immune system and he is just getting a rough start in life? CF causes loose stools (for most), either really hungry or never hungry, salty skin (place your tongue on the bottom of his foot and see if it is very salty tasting), belly aches (for most), lost of upper and lower respiratory infections, constipation and/or diarrhea. These are the symptoms he would be having most likely if he has CF. But, if his immune system is weak, he could easily have all of the upper/lower respiratory problems you mentioned. Premies often have trouble with health because of their early start. I believe the bloodwork for CF takes about 2 weeks. I hope this helps.

cabgodfrey · May 5, 2008

Could it be that his premature birth has caused him to have a weaker immune system and he is just getting a rough start in life? CF causes loose stools (for most), either really hungry or never hungry, salty skin (place your tongue on the bottom of his foot and see if it is very salty tasting), belly aches (for most), lost of upper and lower respiratory infections, constipation and/or diarrhea. These are the symptoms he would be having most likely if he has CF. But, if his immune system is weak, he could easily have all of the upper/lower respiratory problems you mentioned. Premies often have trouble with health because of their early start. I believe the bloodwork for CF takes about 2 weeks. I hope this helps.

cabgodfrey · May 5, 2008

Could it be that his premature birth has caused him to have a weaker immune system and he is just getting a rough start in life? CF causes loose stools (for most), either really hungry or never hungry, salty skin (place your tongue on the bottom of his foot and see if it is very salty tasting), belly aches (for most), lost of upper and lower respiratory infections, constipation and/or diarrhea. These are the symptoms he would be having most likely if he has CF. But, if his immune system is weak, he could easily have all of the upper/lower respiratory problems you mentioned. Premies often have trouble with health because of their early start. I believe the bloodwork for CF takes about 2 weeks. I hope this helps.

Mommafirst · May 5, 2008

Welcome to the forum. Since you said his bloodwork is going to Mayo, I'm assuming its just a panel that looks for a small number of the 1500+ types of cf mutations. They usually do this first b/c its cheaper, but if it comes back negative for 32 mutations, you still have quite a bit more to test. The panels come back quickly (under 2 weeks), but the larger one could take as long as 8 weeks.

I hope you get some answers.

Mommafirst · May 5, 2008

Welcome to the forum. Since you said his bloodwork is going to Mayo, I'm assuming its just a panel that looks for a small number of the 1500+ types of cf mutations. They usually do this first b/c its cheaper, but if it comes back negative for 32 mutations, you still have quite a bit more to test. The panels come back quickly (under 2 weeks), but the larger one could take as long as 8 weeks.

I hope you get some answers.

Mommafirst · May 5, 2008

Welcome to the forum. Since you said his bloodwork is going to Mayo, I'm assuming its just a panel that looks for a small number of the 1500+ types of cf mutations. They usually do this first b/c its cheaper, but if it comes back negative for 32 mutations, you still have quite a bit more to test. The panels come back quickly (under 2 weeks), but the larger one could take as long as 8 weeks.

I hope you get some answers.

Mommafirst · May 5, 2008

Welcome to the forum. Since you said his bloodwork is going to Mayo, I'm assuming its just a panel that looks for a small number of the 1500+ types of cf mutations. They usually do this first b/c its cheaper, but if it comes back negative for 32 mutations, you still have quite a bit more to test. The panels come back quickly (under 2 weeks), but the larger one could take as long as 8 weeks.

I hope you get some answers.

Mommafirst · May 5, 2008

Welcome to the forum. Since you said his bloodwork is going to Mayo, I'm assuming its just a panel that looks for a small number of the 1500+ types of cf mutations. They usually do this first b/c its cheaper, but if it comes back negative for 32 mutations, you still have quite a bit more to test. The panels come back quickly (under 2 weeks), but the larger one could take as long as 8 weeks.
 
 I hope you get some answers.

chrissyd · May 5, 2008

I was diagnosed as a child with asthma and cronic bronchitis, I too had allergies, and after I was diagnosed with CF I found out I had nasal polyps. (I also have a blood clotting problem. My blood clots too quickly)

If you have a family history of a disease that causes these problems then ask about it. Make sure that it is ruled out. Ask if they've done an Ambry full panel test, that will test for more CF genes than just a regular panel. For more info check out the thread
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y">Ambry Genetics</a>
Then move down the list of any other family medical problems...

I found some sites that may help:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=33347">Info on Lung Disease</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.phoenixchildrens.com/emily-center/child-health-topics/lung-disorders.html">Lung disorders</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm">MedLine</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/bpd.html">Kids health</a>

Keep in mind I'm just putting this links up here for you to look around...just to get more insight (I hope) on what to discuss with the doctor; if the test and Ambry come back negative.
Keep us posted!

<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF

chrissyd · May 5, 2008

I was diagnosed as a child with asthma and cronic bronchitis, I too had allergies, and after I was diagnosed with CF I found out I had nasal polyps. (I also have a blood clotting problem. My blood clots too quickly)

If you have a family history of a disease that causes these problems then ask about it. Make sure that it is ruled out. Ask if they've done an Ambry full panel test, that will test for more CF genes than just a regular panel. For more info check out the thread
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y">Ambry Genetics</a>
Then move down the list of any other family medical problems...

I found some sites that may help:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=33347">Info on Lung Disease</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.phoenixchildrens.com/emily-center/child-health-topics/lung-disorders.html">Lung disorders</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm">MedLine</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/bpd.html">Kids health</a>

Keep in mind I'm just putting this links up here for you to look around...just to get more insight (I hope) on what to discuss with the doctor; if the test and Ambry come back negative.
Keep us posted!

<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF

chrissyd · May 5, 2008

I was diagnosed as a child with asthma and cronic bronchitis, I too had allergies, and after I was diagnosed with CF I found out I had nasal polyps. (I also have a blood clotting problem. My blood clots too quickly)

If you have a family history of a disease that causes these problems then ask about it. Make sure that it is ruled out. Ask if they've done an Ambry full panel test, that will test for more CF genes than just a regular panel. For more info check out the thread
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y">Ambry Genetics</a>
Then move down the list of any other family medical problems...

I found some sites that may help:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=33347">Info on Lung Disease</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.phoenixchildrens.com/emily-center/child-health-topics/lung-disorders.html">Lung disorders</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm">MedLine</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/bpd.html">Kids health</a>

Keep in mind I'm just putting this links up here for you to look around...just to get more insight (I hope) on what to discuss with the doctor; if the test and Ambry come back negative.
Keep us posted!

<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF

chrissyd · May 5, 2008

I was diagnosed as a child with asthma and cronic bronchitis, I too had allergies, and after I was diagnosed with CF I found out I had nasal polyps. (I also have a blood clotting problem. My blood clots too quickly)

If you have a family history of a disease that causes these problems then ask about it. Make sure that it is ruled out. Ask if they've done an Ambry full panel test, that will test for more CF genes than just a regular panel. For more info check out the thread
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y">Ambry Genetics</a>
Then move down the list of any other family medical problems...

I found some sites that may help:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=33347">Info on Lung Disease</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.phoenixchildrens.com/emily-center/child-health-topics/lung-disorders.html">Lung disorders</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm">MedLine</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/bpd.html">Kids health</a>

Keep in mind I'm just putting this links up here for you to look around...just to get more insight (I hope) on what to discuss with the doctor; if the test and Ambry come back negative.
Keep us posted!

<img src="i/expressions/rose.gif" border="0">
Chrissy
30 W/CF

chrissyd · May 5, 2008

I was diagnosed as a child with asthma and cronic bronchitis, I too had allergies, and after I was diagnosed with CF I found out I had nasal polyps. (I also have a blood clotting problem. My blood clots too quickly)
 
 If you have a family history of a disease that causes these problems then ask about it. Make sure that it is ruled out. Ask if they've done an Ambry full panel test, that will test for more CF genes than just a regular panel. For more info check out the thread
 <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y">Ambry Genetics</a>
 Then move down the list of any other family medical problems...
 
 I found some sites that may help:
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=33347">Info on Lung Disease</a>
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.phoenixchildrens.com/emily-center/child-health-topics/lung-disorders.html">Lung disorders</a>
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/ency/article/001088.htm">MedLine</a>
 <a target=_blank class=ftalternatingbarlinklarge href="http://kidshealth.org/parent/medical/lungs/bpd.html">Kids health</a>
 
 Keep in mind I'm just putting this links up here for you to look around...just to get more insight (I hope) on what to discuss with the doctor; if the test and Ambry come back negative.
 Keep us posted!
 
 <img src="i/expressions/rose.gif" border="0">
 Chrissy
 30 W/CF

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