Please Help!

[jonandlindsay]

In the last three weeks or so my 2-1/2 yr. old with CF has had a great change in her stools. She was taking three Creon 5s per meal and was doing great. She was just recently potty-trained and her stools were well-formed and when dumped in the "big" toilet, sunk like rocks (sorry about the visual). However, for the past few weeks her stools have been much less formed, smell worse, and always float. She has not had any change in diet, both quantity-wise and food-wise. Her Dr. had us increase her enzymes to almost double what she was taking and things have not changed at all. I am worried that there is something else going on with her digestion-wise (perhaps not even CF related?). I just don't feel like doubling her enzymes is the answer since it has made no difference and she really didn't have any change in eating.

Has anyone else ever experieced this? I'd love any advice or information. I'm considering taking her to a chiropractor or naturopathic dr. to see what they might say.

Thanks everyone......

Lindsay
~Mom to Ella - 2-1/2 w CF

 

[coltsfan715]

I know some people on the boards have mentioned that they had to change brands of enzymes from say pancreas to ultrase or something along those lines because one type just stopped being effective. Maybe that is something you can discuss with her doc. It may be that simple that instead of increasing her enzymes they just need to change the brand/type or something. I hope that is all it is and that it is not something more serious.

Take Care,
Lindsey

 

[coltsfan715]

to add as well
Sometimes I have times where I am taking enzymes but still have loose stools or ones that float. Often I can contribute it to meds I am taking - if I have had a change in anything, sometimes it is something I have eaten, and on rare occasion it has been a stomach flu type thing. If you haven't changed her foods it is probably not that and I hope it is not a stomach flu type thing - though I am sure she would have more symptoms than that. Have any of her meds changed lately? Other than an increase in enzymes, sometimes antibiotics (oral or IV) cause me to have problems.
Sometimes this happens too and there is no real answer for it. It lasts a day or so then goes back to normal ... almost like my body is throwing a tantrum.

Lindsey

 

[Scarlett81]

Well I'm 23 so I know there's a difference between a 23 yr old and a 2 yr old-but I went through a similar thing recently-by bowels started getting oily, smelly, loose, I had bloating-gas, ect...you get it. But I hadn't changed anything in my diet or enyzme either.

My CF doc reccomended to see a GI specialist-which I did, and he reccomended a colonoscopy. The wierd thing in all this is the problem has stopped! All the sudden-so who knows? I also have no problem in my wieght-but if your daughter has no weight issues-and as you know, weight can be a HUGE issue in CF-you don't want wieght/digestive issues to start!!!!! SO, if it was my daughter I'd bring her to a gastroenterologist, regular or pediatric-or pick based on your cf teams reccomendation. She may need an enzyme change, a look "up there" to make sure all is ok-even just a tummy ultrasound can show alot. You want to rule out major things first, and then act to prevent problems like intestinal blockages-which while not life threatening are a big pain! I've had em!

I think what's happening is relatively common in cf, so don't panic. Just find some good help.

 

[Scarlett81]

also-I hope you don't mind me saying this-and it's just my opinion, so please don't be offended! I'm all for chiropractors and naturopaths. I see them BOTH regularly! But, this is a child, and there is some change happening to her body here-again I stress-you don't want the weight issues to start with her. I'd go the doctor route first-then chiro or natural. I rely on those options too, but more for mantainence. I know we're all desperate in this cf boat!

 

[Jane]

My boys go through periods where they have really greasy stools too. Our doctor gave them an antacid to take twice a day, thinking the enzymes might be breaking down too soon. We've also changed brands of enzymes a few times too.

 

[kayleesgrandma]

Lindsey, my grandaughter uses Ultrase enzymes, and our CF doctor says she shouln't use more than 9-13 a day or it could damage her pancrease. He prescribed Previcide so that she is able to absorb enzymes better--something about the stomach acid. He also thinks she is lactose intolerant so she takes a Lactaid tablet with anything dairy. Hope this helps.

 

[Ratatosk]

There've also been cases where people have discovered that when emptying out the contents of the capsules, the beads are shriveled up, are brown and smell off -- I'd doublecheck your enzymes to make sure they look and smell okay. Also, there was a case in which a pharmacy substituted look alike generics and it wasn't discovered until the child commented she had really bad stools.

DS is on Pancrease mt 4s and we've just begun gradually upping his dosage a half capsule -- used to have 3 1/2 to 4 capsules for meals and 1 for a snack. Now we're up to 4 1/2 for a meal and 2 for a snack. He's become a bigger snacker/grazer lately. Another thing I've noticed is that he's really starting to dawdle while he eats. So sometimes toward the end of a meal, I give him another enzyme capsule. Some people have found splitting up the doses of enzymes work well, too.

Liza