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View Full Version : 18 month old possible CF, question?



heatherrose415
02-23-2007, 03:24 PM
Hello everyone, I dont know if i belong here, but im curious as to what others think and have gone through while i wait!

My son Kaiden is 18 months old and has had GI issues since birth and has gone through all kinds of different tests.

A few months ago they ordered the sweat test, which they told me was negative, didnt give me a number. Since then he has had a colonoscopy, endoscopy, and pancreatic function test. His Pancreatic Function Test showed his pancreas wasnt releasing his Amylase enzyme. So our Dr. called and said he would need the enzyme put in his food and he might outgrow it. anyone heard of outgrowing it?

Anyway, a friend called whos son has CF and has a very similar situation, (she might be on here, lol) and told me to call my Dr. and ask what his sweat test number was. It was 44. which is borderline.

So with it being 44 and having pancreatic amylase deficiency, i asked to do the genetic test now, rather than 6 months from now like they were going to do, and thankfully the Dr. agreed. so we will be getting that done when the lab gets his order.

What do you guys think? is there a chance he doesnt have it, even with both of those things? please be honest with me. Im already as scared as i can be, so you wont be able to scare me anymore. I just want to know what im looking at.

and how long does it generally take to get the results? oh, and i asked for the ambry test <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all soooooooooooooooooooooooooo much!!!

heatherrose415
02-23-2007, 03:24 PM
Hello everyone, I dont know if i belong here, but im curious as to what others think and have gone through while i wait!

My son Kaiden is 18 months old and has had GI issues since birth and has gone through all kinds of different tests.

A few months ago they ordered the sweat test, which they told me was negative, didnt give me a number. Since then he has had a colonoscopy, endoscopy, and pancreatic function test. His Pancreatic Function Test showed his pancreas wasnt releasing his Amylase enzyme. So our Dr. called and said he would need the enzyme put in his food and he might outgrow it. anyone heard of outgrowing it?

Anyway, a friend called whos son has CF and has a very similar situation, (she might be on here, lol) and told me to call my Dr. and ask what his sweat test number was. It was 44. which is borderline.

So with it being 44 and having pancreatic amylase deficiency, i asked to do the genetic test now, rather than 6 months from now like they were going to do, and thankfully the Dr. agreed. so we will be getting that done when the lab gets his order.

What do you guys think? is there a chance he doesnt have it, even with both of those things? please be honest with me. Im already as scared as i can be, so you wont be able to scare me anymore. I just want to know what im looking at.

and how long does it generally take to get the results? oh, and i asked for the ambry test <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all soooooooooooooooooooooooooo much!!!

heatherrose415
02-23-2007, 03:24 PM
Hello everyone, I dont know if i belong here, but im curious as to what others think and have gone through while i wait!

My son Kaiden is 18 months old and has had GI issues since birth and has gone through all kinds of different tests.

A few months ago they ordered the sweat test, which they told me was negative, didnt give me a number. Since then he has had a colonoscopy, endoscopy, and pancreatic function test. His Pancreatic Function Test showed his pancreas wasnt releasing his Amylase enzyme. So our Dr. called and said he would need the enzyme put in his food and he might outgrow it. anyone heard of outgrowing it?

Anyway, a friend called whos son has CF and has a very similar situation, (she might be on here, lol) and told me to call my Dr. and ask what his sweat test number was. It was 44. which is borderline.

So with it being 44 and having pancreatic amylase deficiency, i asked to do the genetic test now, rather than 6 months from now like they were going to do, and thankfully the Dr. agreed. so we will be getting that done when the lab gets his order.

What do you guys think? is there a chance he doesnt have it, even with both of those things? please be honest with me. Im already as scared as i can be, so you wont be able to scare me anymore. I just want to know what im looking at.

and how long does it generally take to get the results? oh, and i asked for the ambry test <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you all soooooooooooooooooooooooooo much!!!

JazzysMom
02-23-2007, 03:30 PM
There is just as much of a chance that he doesnt have CF as he does. BUT if he does you need to know so that he is treat properly as soon as possible. I glad to hear that the genetic testing will be done. Depending on insurance and the doctor depends on if the basic panel showing the top most common genes will be done or a more extensive panel. IF you are getting the basic and no gene mutations come back, please push for more extensive testing. I was dx at 7 & my only problems were digestive. I had no "obvious" respiratory until after my dx so you cant always go by the common symptoms. Good Luck and keep us updated!

JazzysMom
02-23-2007, 03:30 PM
There is just as much of a chance that he doesnt have CF as he does. BUT if he does you need to know so that he is treat properly as soon as possible. I glad to hear that the genetic testing will be done. Depending on insurance and the doctor depends on if the basic panel showing the top most common genes will be done or a more extensive panel. IF you are getting the basic and no gene mutations come back, please push for more extensive testing. I was dx at 7 & my only problems were digestive. I had no "obvious" respiratory until after my dx so you cant always go by the common symptoms. Good Luck and keep us updated!

JazzysMom
02-23-2007, 03:30 PM
There is just as much of a chance that he doesnt have CF as he does. BUT if he does you need to know so that he is treat properly as soon as possible. I glad to hear that the genetic testing will be done. Depending on insurance and the doctor depends on if the basic panel showing the top most common genes will be done or a more extensive panel. IF you are getting the basic and no gene mutations come back, please push for more extensive testing. I was dx at 7 & my only problems were digestive. I had no "obvious" respiratory until after my dx so you cant always go by the common symptoms. Good Luck and keep us updated!

Mommafirst
02-23-2007, 08:36 PM
Hi Heather

Its me, "Heather w/Alyssa", LOL, we spoke the other day. I'm so upset to hear that the doctor just brushed you off with a "its negative" when the number was a 44. My daughter had a 53 and 45 on the sweat test, and is pancreatic sufficient, but came back with 2 genes. I'm glad your doctor is giving you the genetic test, no more questions or hold ups.

I know on the phone I was a bit rushed because I was at work, but I really do understand how very frustrating and upsetting this all can be. Once you go through the diagnosis runaround, and wind up with a CF diagnsosis, I think its easy to be cynical about any other possibilities -- which is where a lot of us around here are. I sure hope you can get some answers (and I do hope that you can get an all-clear from CF). I know you are scared, and there is nothing I can say that will alleviate that fear or devestation if it is CF, but know that preventative care can go a long way with CF and until Kaiden is diagnosed you can't get all you can from that prevention.

Feel free to e-mail or call me if you need to talk. Welcome to the site, I'm sure you will find lots of amazingly helpful and inspirational people around here.

Mommafirst
02-23-2007, 08:36 PM
Hi Heather

Its me, "Heather w/Alyssa", LOL, we spoke the other day. I'm so upset to hear that the doctor just brushed you off with a "its negative" when the number was a 44. My daughter had a 53 and 45 on the sweat test, and is pancreatic sufficient, but came back with 2 genes. I'm glad your doctor is giving you the genetic test, no more questions or hold ups.

I know on the phone I was a bit rushed because I was at work, but I really do understand how very frustrating and upsetting this all can be. Once you go through the diagnosis runaround, and wind up with a CF diagnsosis, I think its easy to be cynical about any other possibilities -- which is where a lot of us around here are. I sure hope you can get some answers (and I do hope that you can get an all-clear from CF). I know you are scared, and there is nothing I can say that will alleviate that fear or devestation if it is CF, but know that preventative care can go a long way with CF and until Kaiden is diagnosed you can't get all you can from that prevention.

Feel free to e-mail or call me if you need to talk. Welcome to the site, I'm sure you will find lots of amazingly helpful and inspirational people around here.

Mommafirst
02-23-2007, 08:36 PM
Hi Heather

Its me, "Heather w/Alyssa", LOL, we spoke the other day. I'm so upset to hear that the doctor just brushed you off with a "its negative" when the number was a 44. My daughter had a 53 and 45 on the sweat test, and is pancreatic sufficient, but came back with 2 genes. I'm glad your doctor is giving you the genetic test, no more questions or hold ups.

I know on the phone I was a bit rushed because I was at work, but I really do understand how very frustrating and upsetting this all can be. Once you go through the diagnosis runaround, and wind up with a CF diagnsosis, I think its easy to be cynical about any other possibilities -- which is where a lot of us around here are. I sure hope you can get some answers (and I do hope that you can get an all-clear from CF). I know you are scared, and there is nothing I can say that will alleviate that fear or devestation if it is CF, but know that preventative care can go a long way with CF and until Kaiden is diagnosed you can't get all you can from that prevention.

Feel free to e-mail or call me if you need to talk. Welcome to the site, I'm sure you will find lots of amazingly helpful and inspirational people around here.

NoExcuses
02-23-2007, 10:58 PM
Make sure you're getting the full panel ambry test otherwise the genetic test may miss the gene....

NoExcuses
02-23-2007, 10:58 PM
Make sure you're getting the full panel ambry test otherwise the genetic test may miss the gene....

NoExcuses
02-23-2007, 10:58 PM
Make sure you're getting the full panel ambry test otherwise the genetic test may miss the gene....

Alyssa
02-24-2007, 05:28 AM
Please read the first entry on my blog page -- my kids sweat tests are 38 & 41. 44 is clearly borderline -- push hard for full genetic testing and ask about the nasal potential difference test. It can help diagnose when sweat testing and genetic testing are inconclusive, but it isn't available everywhere and is uncomfortable for small children.

Alyssa
02-24-2007, 05:28 AM
Please read the first entry on my blog page -- my kids sweat tests are 38 & 41. 44 is clearly borderline -- push hard for full genetic testing and ask about the nasal potential difference test. It can help diagnose when sweat testing and genetic testing are inconclusive, but it isn't available everywhere and is uncomfortable for small children.

Alyssa
02-24-2007, 05:28 AM
Please read the first entry on my blog page -- my kids sweat tests are 38 & 41. 44 is clearly borderline -- push hard for full genetic testing and ask about the nasal potential difference test. It can help diagnose when sweat testing and genetic testing are inconclusive, but it isn't available everywhere and is uncomfortable for small children.

heatherrose415
02-25-2007, 06:09 PM
Thank you all so much!!!

and nice to hear from you again "Heather w/ Alyssa" LOL.

I have a few more questions, have any of you heard of a baby/kid outgrowing Pancreatic Amylase Deficiency????

We finally got his Pancrease Enzyme, he eats so much im constantly adding it to food, lol, and he doesnt seem to bothered by it being in there, so thats good!

Another thing, do any of you have CF in your family? I dont know any of my family with CF. and I signed that thing when i was pregnant for them to check me with CF and nothing came up?????

I cant believe we have to wait 2 months to find out!

Thanks again!

heatherrose415
02-25-2007, 06:09 PM
Thank you all so much!!!

and nice to hear from you again "Heather w/ Alyssa" LOL.

I have a few more questions, have any of you heard of a baby/kid outgrowing Pancreatic Amylase Deficiency????

We finally got his Pancrease Enzyme, he eats so much im constantly adding it to food, lol, and he doesnt seem to bothered by it being in there, so thats good!

Another thing, do any of you have CF in your family? I dont know any of my family with CF. and I signed that thing when i was pregnant for them to check me with CF and nothing came up?????

I cant believe we have to wait 2 months to find out!

Thanks again!

heatherrose415
02-25-2007, 06:09 PM
Thank you all so much!!!

and nice to hear from you again "Heather w/ Alyssa" LOL.

I have a few more questions, have any of you heard of a baby/kid outgrowing Pancreatic Amylase Deficiency????

We finally got his Pancrease Enzyme, he eats so much im constantly adding it to food, lol, and he doesnt seem to bothered by it being in there, so thats good!

Another thing, do any of you have CF in your family? I dont know any of my family with CF. and I signed that thing when i was pregnant for them to check me with CF and nothing came up?????

I cant believe we have to wait 2 months to find out!

Thanks again!

NoExcuses
02-25-2007, 07:01 PM
My mom has 10 brothers & sisters - no CF in my family. I was the 1st. Just cuz you have no CF in your family does not mean your kid can't have it.

In terms of growing out of pancreatic insufficiency - I don't think so. Either you are sufficient or you're not. It's like being lactose intolerant - you don't grow out of it.

NoExcuses
02-25-2007, 07:01 PM
My mom has 10 brothers & sisters - no CF in my family. I was the 1st. Just cuz you have no CF in your family does not mean your kid can't have it.

In terms of growing out of pancreatic insufficiency - I don't think so. Either you are sufficient or you're not. It's like being lactose intolerant - you don't grow out of it.

NoExcuses
02-25-2007, 07:01 PM
My mom has 10 brothers & sisters - no CF in my family. I was the 1st. Just cuz you have no CF in your family does not mean your kid can't have it.

In terms of growing out of pancreatic insufficiency - I don't think so. Either you are sufficient or you're not. It's like being lactose intolerant - you don't grow out of it.

Mommafirst
02-25-2007, 07:09 PM
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.

Mommafirst
02-25-2007, 07:09 PM
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.

Mommafirst
02-25-2007, 07:09 PM
Hi Heather --
<br>
<br>
No I've never heard of growing out of pancreatic insufficiency. I was told Alyssa could become insufficient but it wasn't something that flip flops. <br>
<br>
We have no known CF in our family, I think most people on this site will respond the same -- as far as I've seen. I do know of a second cousin born in the 1940's who passed away at age 3 -- there is no one alive in my family to confirm this but I wonder if its possible that it was undiagnosed Cf. <br>
<br>
My daughter's mutations would not have come up on the pregnancy screen (I don't believe) so i think its possible to have it missed in the pregnancy and even the newborn screen -- but I may be wrond.<br>
<br>
By the way, this Newly Diagnosed board doesn't get much traffic -- you'll get more answers if you go to the Family board.<br>
<br>
Hang in there -- 2 months is miserable.

heatherrose415
02-25-2007, 09:08 PM
ok, thanks guys!!

I will post my original in the families thread.

and yes. two months is miserable!

heatherrose415
02-25-2007, 09:08 PM
ok, thanks guys!!

I will post my original in the families thread.

and yes. two months is miserable!

heatherrose415
02-25-2007, 09:08 PM
ok, thanks guys!!

I will post my original in the families thread.

and yes. two months is miserable!

Alyssa
02-26-2007, 05:09 AM
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic

Alyssa
02-26-2007, 05:09 AM
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic

Alyssa
02-26-2007, 05:09 AM
Ditto to everything Heather said --

No family history -- most people will say that too

pregnancy screening -- it is very possible to miss many CF genes -- there are over 1500, they probably only screened for less than 100

insufficient doesn't go sufficient (at least I've never heard of it) and I was told the same thing.... sufficient could turn insufficient, but not all that likely -- usually what you start with is what you stay with.

Newly diagnosed doesn't get much traffic