If you take enzymes how long after the c/f diagnosis

[debs2girls]

If you take enzymes how long after the c/f diagnosis

did you or your child start taking them? Did your doctor do a stool elastates test to decide if they are needed?
My dd's doctor said she needs this test, but he hasnt scheduled it yet. I have been on the phone with his office everyday for over a week, and I havent gotten anywhere.
Debbie

 

[Haileysmommy]

RE: If you take enzymes how long after the c/f diagnosis

Hailey started on them the day she was diagnosed. Her IRT levels (I think is protien) were through the roof on the newborn screen. They did more tests to confirm a few weeks later.

 

[JazzysMom]

RE: If you take enzymes how long after the c/f diagnosis

I was dx at 7. AT the time my biggest problem was digestive. Although I was ok with my weight & growth every time I ate I had terrible cramps & oily diahreah. It caused severe problems in my first years of school. After tons of allergy testing I was sent for a sweat test. I dont remember the result numbers, but I know it was extremely high. I was started on enzymes that day & even went home with some until we could get the prescription filled. I cant remember what happened last week, but I remember most about my dx 30 years ago. LOL!

 

[smoothdave]

RE: If you take enzymes how long after the c/f diagnosis

hey tehre i was dx about a year and a half ago now, just when i was told i had it i had to give a sample and then i was told to go on them, i dont personally take a lot of them, i am only takin about 4 a day, but some ppl take loads more than that, just depends how ur digestive system is i suppose ( if i am wrong feel free to correct)!

19/m

 

[melleemac]

RE: If you take enzymes how long after the c/f diagnosis

Both my boys started taking enzymes as soon as they were diagnosed. They were very under weight, failure to thrive and malsorbation.
Mel

 

[anonymous]

RE: If you take enzymes how long after the c/f diagnosis

My daughter started taking enzymes the day after her positive sweat test. She was five weeks old. My son started taking them right after his birth. They didn't do any tests on him, they just assumed that he would need them and he did. The cf centers usually have lots of samples to give out to new those who are newly diagnosed.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

RE: If you take enzymes how long after the c/f diagnosis

My daughter took them with her first meal after having a positive sweat test at age 12 months. I hope your daughter gets enzymes soon.

 

[anonymous]

RE: If you take enzymes how long after the c/f diagnosis

DS started them at about 1 week the day after he was diagnosed. He'd had a bowel obstruction due to meconium illeus. The dietician later had a stool test done a few weeks later but the CF doctor just shook his head and asked "why, we already know he's pancreatic insufficient, otherwise he wouldn't be here and wouldn't have nasty diapers without enzymes"

liza

 

[anonymous]

RE: If you take enzymes how long after the c/f diagnosis

I am going to be the odd one and say 3 1/2 years after diagnosis. When I was diagnosed most of my problems were respiratory although I had some GI problems but because of my weight and everything was good I was told it probably was stress or something like IBS(yes this was a CF doctor). It took that long of a fight to get anybody to see that its not stress or IBS and to give enzymes a try...sure enough they really helped

 

[JennifersHope]

RE: If you take enzymes how long after the c/f diagnosis

I actually started taking mine before I was even confirmed to have CF.. My dr said if ever he saw someone with mal absorbtion it was me... That is what finally led to my dignoise.. for some reason they ignored the fact that I had chronic bronchitis and pneumonia for 29 years but as soon as my pancreas stopped working.. walaaaaaaaaa the lights came on....

Taking enzymes has made a huge difference in my quality of life.. I only get stomach pain now if I don't take enough or if I take to much.. otherwise I am fine....

Goodluck,

Jennifer

 

[HD]

RE: If you take enzymes how long after the c/f diagnosis

When my guy was diagnosed at 6 months he started the next day. I would be worried if they were not even returning your calls. Are you going to a CF center? You should be getting an evaluation from a nutritionist as well!

 

[debs2girls]

RE: If you take enzymes how long after the c/f diagnosis

Ty everyone for your responses. Yes, HD we are going to a CF center...supposed to be a very good one.
Well, another week and still no answers. We go back on the 19th, but I dont want to wait tbat long for the test because then we will still have to wait for the results.
I will keep you all posted,
Debbie