My little girl has Cf, and takes pancreatic..
My little girl has CF, (Cystic Fibrosis), and although it's usually associated with being a lung condition, she currently has only the digestive part as far as to our knowledge, and has been taking pancreatic enzymes since she was 3 months old. (she'll be 5 in April.) She takes Creon 10 currently. She started out taking a powder, called Viokase, but it caused bleeding ulcers in her mouth when she was 4 months old, and we ended up going to stay in the hospital a week after they were prescribed, and she's had to have 3 endoscopies, from the time she was diagnosed, until the age of 4 months, to check for ulcers in the stomach, but none were there, Thank God, they were only in her mouth. So, she's started taking Creon 5 that week, and was on it, until last year, when the doctor decided to up her to Creon 10, so she wouldn't have to take so many of the Creon 5 capsules at each meal, and snack. She currently takes 2 at each snack, and 3 at each meal.
We are going for a check up in early April, her CF doctor is back, (we live in Katrina-hit area,(50 miles from N.O., and 50 from Gulfport, MS) and her doctor was in New Orleans at Tulane Hospital.) He's back in the area, but now he's practicing in Metairie, so it will be like a reunion, seeing him again.
I thought she would have a tough time, and be hesitant on taking the capsules at first, because we have to dump them on her tongue, but we tell her it's her seasoning, and she opens up, and sticks her tongue out for me!
Her preschool is also very good about making sure she gets her medicine. Next year, will be a little of a challenge, however, as she will start kindergarten, and I don't teach in the same town where we live, so she won't be at my school most likely,and some schools SHARE a school nurse,so...we're trying to decide right now, actually, what we're going to do about next year.
But, I think the coolest part to seeing her grow up,in spite of having CF, I try to let her do things other kids do, and this child went from near death at 3 months old, and possibly having a GI button inserted in her the next month if she didn't gain any weight, and taking 10 medicines 2 times a day, and two breathing treatments a day, plus digestive enzmyes, to where she is now...a breathing treatment if she sounds congested, or has a cold, in the morning and night, and only digestive enzymes. To me, that's a miracle in itself. Oh, and she did start gaining weight the next month, after she was put on the medicine, and is about the same height and weight as all of the other kids at her preschool, who are her age.
So, to me those are truely blessings.
Best of luck to you, and your husband!
Please, let me know if you want to chat about this again, or if you have any questions about enzymes.
P.S. Also, a cousin of mine has Celiac Sprue, and we found out after my little girl was diagnosed with Cystic fibrosis. celiac is a gluten-intolerance. It's controlled by cutting sources of gluten from your diet, and can cause, diarrhea, weight gain/weight loss, and many other symptons....so can cystic fibrosis. All the doctors have told me that we have to have a family history somewhere, possibly generations ago, and it may have skipped a few generations for the gene, (I have to carry the gene, and my husband has to carry the gene for CF, and even if we both carry it, there is still only a %25 chance that we would have a child with CF, and of course, our only daughter has it, so if we were to have any more children, they would have a 1 in 2 chance of having CF, so we've decided not to have anymore children.)
The odd part is, we have yet to find any genetic link in either of our families, or extended families. My family is very large, (21 first cousins on my dad's side alone...and most of them have CHILDREN that are close to MY age...lol
And some of THEM have children...still no sign of CF.)
So, it's a mystery.
REB
