18 month old possible CF, question?

[heatherrose415]

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 the chances of him having CF are? 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.

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!

Thank you all soooooooooooooooooooooooooo much!!!

 

[heatherrose415]

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 the chances of him having CF are? 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.

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!

Thank you all soooooooooooooooooooooooooo much!!!

 

[heatherrose415]

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 the chances of him having CF are? 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.

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!

Thank you all soooooooooooooooooooooooooo much!!!

 

[purplemartin]

I think getting the full panel is a great idea! Personally I can't beleive that the doctor did not suggest that on his own, especially with the sweat test results coming back borderline. Also, make sure that all testing -CF wise- is done at an accredited CF center, you can find one at cff.org. It sounds like possible CF to me, but hopefully the full panel will give you some insight. By the way, they told is it would take several weeks to get the results back, but we got the diagnosis just a week and a half later. Please keep us updated!

 

[purplemartin]

I think getting the full panel is a great idea! Personally I can't beleive that the doctor did not suggest that on his own, especially with the sweat test results coming back borderline. Also, make sure that all testing -CF wise- is done at an accredited CF center, you can find one at cff.org. It sounds like possible CF to me, but hopefully the full panel will give you some insight. By the way, they told is it would take several weeks to get the results back, but we got the diagnosis just a week and a half later. Please keep us updated!

 

[purplemartin]

I think getting the full panel is a great idea! Personally I can't beleive that the doctor did not suggest that on his own, especially with the sweat test results coming back borderline. Also, make sure that all testing -CF wise- is done at an accredited CF center, you can find one at cff.org. It sounds like possible CF to me, but hopefully the full panel will give you some insight. By the way, they told is it would take several weeks to get the results back, but we got the diagnosis just a week and a half later. Please keep us updated!

 

[heatherrose415]

Thank you very much! I will definately keep you all updated! oh and i did ask that it get sent to accredited CF testing area, and he said it will.

 

[heatherrose415]

Thank you very much! I will definately keep you all updated! oh and i did ask that it get sent to accredited CF testing area, and he said it will.

 

[heatherrose415]

Thank you very much! I will definately keep you all updated! oh and i did ask that it get sent to accredited CF testing area, and he said it will.

 

[Edna]

Hi
Sounds like you have the same thing going on with your son as I do with my daughter and son. Please read my post entitled "Negative sweat test but PI and Recurrent Pneumonia".

My kids started with just GI symptoms but now both have had recurrent pneumonia. The have each had three negative sweat tests and negative CF screening tests(which tests for 30 of the more than 1500 known gene mutations). I am going to push now for the more comprehensive Ambry test.

Let me know how your tests turn out, I am very curious. My kids also had the endoscopic pancreatic function tests. They were normal on Lipase, but deficient of Amylase and Protease. Also deficient of the disaccharide enzymes.

Thanks for your post. I am out to find as much information as I can.

Edna

 

[Edna]

Hi
Sounds like you have the same thing going on with your son as I do with my daughter and son. Please read my post entitled "Negative sweat test but PI and Recurrent Pneumonia".

My kids started with just GI symptoms but now both have had recurrent pneumonia. The have each had three negative sweat tests and negative CF screening tests(which tests for 30 of the more than 1500 known gene mutations). I am going to push now for the more comprehensive Ambry test.

Let me know how your tests turn out, I am very curious. My kids also had the endoscopic pancreatic function tests. They were normal on Lipase, but deficient of Amylase and Protease. Also deficient of the disaccharide enzymes.

Thanks for your post. I am out to find as much information as I can.

Edna

 

[Edna]

Hi
Sounds like you have the same thing going on with your son as I do with my daughter and son. Please read my post entitled "Negative sweat test but PI and Recurrent Pneumonia".

My kids started with just GI symptoms but now both have had recurrent pneumonia. The have each had three negative sweat tests and negative CF screening tests(which tests for 30 of the more than 1500 known gene mutations). I am going to push now for the more comprehensive Ambry test.

Let me know how your tests turn out, I am very curious. My kids also had the endoscopic pancreatic function tests. They were normal on Lipase, but deficient of Amylase and Protease. Also deficient of the disaccharide enzymes.

Thanks for your post. I am out to find as much information as I can.

Edna

 

[Edna]

One more thing...they also told me that my kids might outgrow it. I don't know if I believe that. My daughter is having a repeat endoscopy and a colonoscopy today to compare pancreatic function to her last test.

Any prayers would be appreciated

Edna

 

[Edna]

One more thing...they also told me that my kids might outgrow it. I don't know if I believe that. My daughter is having a repeat endoscopy and a colonoscopy today to compare pancreatic function to her last test.

Any prayers would be appreciated

Edna

 

[Edna]

One more thing...they also told me that my kids might outgrow it. I don't know if I believe that. My daughter is having a repeat endoscopy and a colonoscopy today to compare pancreatic function to her last test.

Any prayers would be appreciated

Edna

 

[heatherrose415]

Thanks Edna!
What was the numbers for your kids sweat tests? and did your dr. give you the number on how much amylase is being released? i know i sound confusing, LOL. my dr. said normal fluid number is 32, and kaidens was 8. did your dr. put them on the enzymes? my son is on Pancrease every meal and snack now.

I will definately keep you up to date on the test results. I am so nervous and scared!!

Your daughter is in my prayers! i hope it all goes ok!! and i am very interested to see if she has outgrown it!

 

[heatherrose415]

Thanks Edna!
What was the numbers for your kids sweat tests? and did your dr. give you the number on how much amylase is being released? i know i sound confusing, LOL. my dr. said normal fluid number is 32, and kaidens was 8. did your dr. put them on the enzymes? my son is on Pancrease every meal and snack now.

I will definately keep you up to date on the test results. I am so nervous and scared!!

Your daughter is in my prayers! i hope it all goes ok!! and i am very interested to see if she has outgrown it!

 

[heatherrose415]

Thanks Edna!
What was the numbers for your kids sweat tests? and did your dr. give you the number on how much amylase is being released? i know i sound confusing, LOL. my dr. said normal fluid number is 32, and kaidens was 8. did your dr. put them on the enzymes? my son is on Pancrease every meal and snack now.

I will definately keep you up to date on the test results. I am so nervous and scared!!

Your daughter is in my prayers! i hope it all goes ok!! and i am very interested to see if she has outgrown it!

 

[ChaufferMom1]

Hi Heatherrose and Edna;
Wow I thought my daughter was the only one with just originally Amylase deficiency! I wish you both the best of luck with the scope today Edna, and with your genetic testing Heatherrose. Anyway, Amber is now 17, and was diagnosed with pancreatic Amylase deficiency 2 years ago through pancreatic stimulation tests while being scoped with both upper and lower scopes. (I wont go into the fun I had to go through to get even that much accomplished, since I had a "female teenaged dancer, so her pain, bloating, large weight loss, and everything else must be anorexia or psychological") Repeated tests using different labs confirmed the Amylase deficiency results. This past summer Amber started showing signs of Lipase deficiency (floating greasy stools) and we increased her enzymes, then again this past month we had to increase her enzymes and right now we are trying a different brand to see if that will help. I requested the initial trial of enzymes. (her GI Doctor says he usually looses CF patients that he diagnoses to the Pulmonologist so he does not have tons of experience in that area) She has to fight to keep her vitamin D and K levels above normal. Her rheumatologist prescribes 50,000 IU of D per week for a month about every 2 to 3 months. When these vitamin levels fall, she also has bloody stools and the smallest cut can bleed forever, she also was given a diagnosis of Fibromyalgia until we got her Vitamin D levels into the upper mid range. But she can tell / feel when they get low with no problems! She had one normal sweat test which I have dismissed as not hers, since the report also came with bloodwork that she did not have done. I had been fighting to get genetic testing done with the insurance company that we had, but our insurance just got switched this January to a different HMO so I get to start all over again.....(oh Fun!). Amber also has chronic sinusitis, GERD, Chronic H-Pylori Negative Gastritis, chronic constipation, Arthropathy of an unknown cause(spine, hips and knees), Asthma, Hyperinflation of the lungs, Nasal cysts, and has been battling recurrent bronchitis for the last 3 months. Her first scope did show moderate Disaccharide deficiency, but the rest have been normal. I have since learned that this can occur for any reason, even a cold which can irritate the intestinal lining can cause a deficiency there, so Amber just uses lactaid or drinks lactose free milk. I have also been told by several different people that the pancrease does not flip flop and make enzymes after it has stopped. I would REALLY love to know the results of your genetic tests. Also Amber had a ton of problems with Hypoglycemic types of health issues until we started giving her enzymes, Her endocrenologist suggested increasing the doseage and this also helped her tremendously, so it is a really good thing your Doctor put your son on the enzymes so rapidly.

Debbie

 

[ChaufferMom1]

Hi Heatherrose and Edna;
Wow I thought my daughter was the only one with just originally Amylase deficiency! I wish you both the best of luck with the scope today Edna, and with your genetic testing Heatherrose. Anyway, Amber is now 17, and was diagnosed with pancreatic Amylase deficiency 2 years ago through pancreatic stimulation tests while being scoped with both upper and lower scopes. (I wont go into the fun I had to go through to get even that much accomplished, since I had a "female teenaged dancer, so her pain, bloating, large weight loss, and everything else must be anorexia or psychological") Repeated tests using different labs confirmed the Amylase deficiency results. This past summer Amber started showing signs of Lipase deficiency (floating greasy stools) and we increased her enzymes, then again this past month we had to increase her enzymes and right now we are trying a different brand to see if that will help. I requested the initial trial of enzymes. (her GI Doctor says he usually looses CF patients that he diagnoses to the Pulmonologist so he does not have tons of experience in that area) She has to fight to keep her vitamin D and K levels above normal. Her rheumatologist prescribes 50,000 IU of D per week for a month about every 2 to 3 months. When these vitamin levels fall, she also has bloody stools and the smallest cut can bleed forever, she also was given a diagnosis of Fibromyalgia until we got her Vitamin D levels into the upper mid range. But she can tell / feel when they get low with no problems! She had one normal sweat test which I have dismissed as not hers, since the report also came with bloodwork that she did not have done. I had been fighting to get genetic testing done with the insurance company that we had, but our insurance just got switched this January to a different HMO so I get to start all over again.....(oh Fun!). Amber also has chronic sinusitis, GERD, Chronic H-Pylori Negative Gastritis, chronic constipation, Arthropathy of an unknown cause(spine, hips and knees), Asthma, Hyperinflation of the lungs, Nasal cysts, and has been battling recurrent bronchitis for the last 3 months. Her first scope did show moderate Disaccharide deficiency, but the rest have been normal. I have since learned that this can occur for any reason, even a cold which can irritate the intestinal lining can cause a deficiency there, so Amber just uses lactaid or drinks lactose free milk. I have also been told by several different people that the pancrease does not flip flop and make enzymes after it has stopped. I would REALLY love to know the results of your genetic tests. Also Amber had a ton of problems with Hypoglycemic types of health issues until we started giving her enzymes, Her endocrenologist suggested increasing the doseage and this also helped her tremendously, so it is a really good thing your Doctor put your son on the enzymes so rapidly.

Debbie