Search results

Thank you all for you comments. Thanks for the info on ADEK. I didn't know that you could get it OTC. In regards to what diseases could cause PI: The only listed causes in children are CF and Schwaccman Diamond Syndrome. Then there are pancreatitis and gastric surgeries listed. That's...

Thank you all for you comments. Thanks for the info on ADEK. I didn't know that you could get it OTC. In regards to what diseases could cause PI: The only listed causes in children are CF and Schwaccman Diamond Syndrome. Then there are pancreatitis and gastric surgeries listed. That's...

Thanks for your insight. Let me clarify...my daughter's lipase was on the low end of normal a year and a half ago. She is now <u>completely</u> insufficient of all pancreatic enzymes. She definitely has fat malabsorption. Yes, she and my son both have been tested for everything from...

Thanks for your insight. Let me clarify...my daughter's lipase was on the low end of normal a year and a half ago. She is now <u>completely</u> insufficient of all pancreatic enzymes. She definitely has fat malabsorption. Yes, she and my son both have been tested for everything from...

Thanks for your insight. Let me clarify...my daughter's lipase was on the low end of normal a year and a half ago. She is now <u>completely</u> insufficient of all pancreatic enzymes. She definitely has fat malabsorption. Yes, she and my son both have been tested for everything from...

Hi everyone, My daughter (4 ?cf) was diagnosed at age 2 with PI. She had an endoscopy with pancreatic function test 1 1/2 years ago, and had normal lipase levels, slightly low amylase and elastase?, and very low trypsin and chromotrypsin?. (I'm not sure I spelled those right) Anyway, she...

Hi everyone, My daughter (4 ?cf) was diagnosed at age 2 with PI. She had an endoscopy with pancreatic function test 1 1/2 years ago, and had normal lipase levels, slightly low amylase and elastase?, and very low trypsin and chromotrypsin?. (I'm not sure I spelled those right) Anyway, she...

Hi everyone, My daughter (4 ?cf) was diagnosed at age 2 with PI. She had an endoscopy with pancreatic function test 1 1/2 years ago, and had normal lipase levels, slightly low amylase and elastase?, and very low trypsin and chromotrypsin?. (I'm not sure I spelled those right) Anyway, she...

Steve, Thanks so much! You are such a great help. I am amazed as I look over this forum! God Bless You! Edna

Hi Steve, I am trying to push my docs for the Ambry test on my kids. They don't really seem familiar with it. They think I am referring to the basic CF screening test. How do I "educate" them and what information do I give them to get them going in the right direction? Thanks, Edna

Tammi, Thanks for the concern and prayers. What symptoms has your son had?? I am always very curious to compare symptoms. My daughter (who will be 3yrs in Dec.) has always had smelly, mucousy poops; lots of gas; HUGE appetite; and she sweats a lot and always looks sort of pale and almost...

Barbara, Thanks for the response. Yes, he was tested at an accredited CF center. I don't know what the numbers were, they just said it was negative. But, he was so young and didn't taste salty then. As of the past couple of months, he now tastes very salty to me. I definitely want him...

You all are probably familiar with my previous posts, but I really need some feedback on my son's symptoms. Jonathan was born in May. He was 6lb 13oz. He apparently had a small meconium blockage that kept him from being able to pass any stool after the meconium. Had a barium enema at 2wks...

Jennifer, Hope things are going well, and that little Andrew is blessing your life everyday. Let us know. Thoughts, hugs, and prayers, Edna

Sharon, Thank you for the note and your prayers. Yes, my daughter has been on enzymes since last Oct. She has done well with them. Within a few days of starting them, she had the first formed bowel movement of her life. She has gained weight fairly, and "normal" to the doctors. I just...

When I looked into the Ambry test for my daughter(2 1/2yr), I was told it would cost me roughly $3000.00. I had to meet my deductible first($2500.00) and then would possibly have to come up with $500 above the deductible. So.....I decided against if for now. She has had three negative sweat...

Okay, my kids aren't Cfers...yet. But, they are precious. Edna, Sarah, 5yrs; Leila, 2 1/2yrs ??CF; Jonathan, 4mos. ??CF

[No message]

Jen, May God be with you during this difficult time, and may He lead you in your decisions. Look to Him, because He knows our sorrows, and bears our burdens. Know that I will be praying for you and your little one. May His love surround you and His strength support you, Edna

Thanks again for the responses. It helps so much just to vent and have feedback. Well, I had no idea how expensive the Ambry test was!! They told me roughly $3000.00. I'm self employed and carry my own insurance, with very high deductibles. They told me I had to meet deductible first...