Another enzyme issue...argh!

[allie1]

I am new to CF(my daughter was diagnosed 2 months ago) and these enzymes are giving me a fit. I have already asked one question on the boards about them and now I have another one. This weekend her enzymes just stopped working and her stools went back to how they were before she was diagnosed and she had 3 prolapses in one day. Her doctor suggested we get a new unopened bottle from the pharmacy and this worked. Which means, somehow her whole bottle of enzymes lost their effectiveness. This really upsets me b/c I had two weeks left in the old bottle and there seems to be no explanation for them turning bad. Has this ever happened to anyone before? I did not take them out in the heat and the exp. date is next year. Do you think the pharm. company would reimburse me? Any suggestions? She is on Creon 10.

Also, does anyone else or their children have a "pot belly". My daughter's doctor told me eventually it might go away but it hasn't gotten any better and she's been on enzymes for two months. Her belly is completely flat in the mornings but once she eats breakfast, it swells up.

Thanks for putting up with all my questions. I have learned a lot from all of you....thanks!

 

[anonymous]

I have had a "pot belly"as you call it ever since I was about 5 and as the years have gone on it now is almost 24/7.
I have been to many specialist across the south as it has become very painful.The only explaination they have is either severe constipation (which I have had monthly bouts with for years) or my body has large amounts of mucus concentrated in my GI tract. <img src="i/expressions/face-icon-small-confused.gif" border="0"> ?? Who knows ,but I try to live a functioning life even with it hurting ribs or pulling muscles from extreme disstension.I know there may be hard times ahead but ,no reason not to enjoy everyday life one day at a time, happy in the time you have with friends and family as your children grow up. Remember as Allie gets older it is good for her to know about her CF but try not to cloud up her childhood with CF when she is healthy .Go and do fun things today because you don't know what tommorrow brings.One more important thing always let her talk openly about her feeling whatever they maybe.

P.S. Maybe the level of creon needs to be adjusted for the pot belly or do a CT scan of the GI tract to look for blockage ?(that's how the found mine in time to save me from a small intestine operation for stool blockage).I hope you get some answers soon. Keep the faith

Marlene- 17 college student w/cf

 

[NoDayButToday]

I'm not sure if the pharmeceutical company would reimburse you- they tend to be run as factories! But I would definitely let them know about what happened, so maybe they can make changes to the packaging or something? If I remember correctly, Creon come in GIANT bottles; they were a pain to carry around in your purse since they were basically 4 or 5 inches all around. This means the enzymes are in an unsealed container for much longer, since you only need so many enzymes a day. I wonder if the company that makes Creon would maybe consider this and use smaller bottles. The "pot belly" will probably never quite go away, like the previous post said. Even when my weight overall is very low, I have a little pouch- nothing too noticeable or bad at all, it's just there. But it shouldn't be super prominent- that can indicate a problem.

 

[anonymous]

The only thing that has ever helped the belly problem is eliminating all dairy products. It does not go away completely, but is much less distended and MUCH more comfortable.

 

[anonymous]

Hi to Allie's mom,

i have to say my son's poop hasn't changed at all it's still mushy and smelly we where told at three weeks old Jason has a large pot belly and when he doesn't feel the best it looks larger then normal the dr also said he will always have the pot belly and thats why some of the kids have such bad gas.Now as far as the creon goes in the state of NJ the kids are put on a Wee care program for the first two years where you get the creon for free and the adek for free they send you 6 bottles of creon and two adek everytime you need it i have on hand 12 bottles of creon the dr said they are good for one month after the date. The pharm won't refund the money but i would call the maker and tell them or go thru your dr's office to see if they can help.
good luck if you want you can e-mail me at home
RLVILLELLA@COMCAST.NET
hope i was a help

Lisa mom of 19m Jason

 

[lovemygirl]

As far as the enzymes go we were told to keep them in the fridge as much as possible. I always have a bottle in my purse, and never had a problem, but the rest are kept in the fridge. This is supposed to be more for warmer climates (we live in Canada) but we do it as a precaution anyways. By the way she is taking Cotazym and not Creon so I don't know if this applies or not. It would be best to check with your pharmacist or cf team.

 

[anonymous]

Hi Allie's Mom,

This has happend to us as well! My son's stools were back to the ones he had before his diagnosis. My husband and I didn't know what to do, so we opened a new can of enzymes....and bingo - all was fine. My son is on Pancreacarb and our rep. is wonderful! I'd find out from your cf center who your Creon rep is and call him/her. They are usually great to work with. Explain what happened to your bottle and they might just send you a new one. Enzymes aren't cheap, are they?? Good luck.

Carey

 

[anonymous]

Hey lovemygirl, where in Canada do you live? Just wondering since I live in Northern Ontario. Don't you find things are confusing in the States? I meen paying for things I couldn't imagine. Anyway, my daughter is four with CF and I have a three yr. old boy as well. Do you have any other children and how old is your daughter?

 

[lovemygirl]

Anonymous,
I live in Montreal. I can't imagine paying for things by living in the US, and am thankful that we have company insurance for meds. Our daughter is 4 and she is and will always be an only child.

 

[anonymous]

Hey in MOntreal, it's hard, I know, I chose to have kids on my own and when they told me my daughter would only live to 35 yrs of age, I was devistated. I decided to go and have another child, my son, through donor sperm, so if anything ever happened to me , my daughter would have someone to have around, you know to be there for her. Anyway, there is only 15 mths between them and they are very close. I always promote them loving each other. It's sad to hear you'll only have the one but I'm sure she is the apple of your eye.(spoiled rotten)I'm sure. HEHE anyway, how is her health? My daughter is mostly digestive and the occasional mucusy cough, she is going for polyp surgery and that's scary but what can I do. take care keep in touch it's nice to have common ground.

 

[anonymous]

My daughter, now 13, has always had a pot belly, but it has lessened over the years. It was much worse when she was little. She looked pregnant when she was one or two, now it's just a little bulge. The explanation was that it is extra gas and stool, but her gas and stools were usually pretty normal. Then recently she went off dairy (actually not 100%, but greatly reduced) and the bloating went almost entirely away. When she eats dairy, it's worse. Another friend of ours who is in college tried the same thing -- she went off dairy entirely, meaning nothing with a trace of dairy or casseine -- and the bloating went away. All of her pants are now too big! I would give it a try. Once you get your enzymes stablized, you can also ask the doctor to test your child's stools to measure the amount of malabsorption. That might give you more information.

 

[jaime]

Same thing for me. When I was little I had a beach ball like belly, my family used to call it my "dinasour egg". That was untill I was about 5 yrs old.
Now that I'm older thankfully the belly is not there anymore. But I do find that when I eat dairy of any kind I do get really bloated.

 

[anonymous]

I am in my third year of college and last year my belly got BIG. I looked pregnant too cause like most CFers I was a stick except this big round belly! During that time I was having major digestive problems...I think I wasnt taking enough enzymes for the increased calories from college food. Once I straightened out my enzyme dosage (had to take more with meals) my bloating went away and all my pants were too big too. I am sure it varies depending on the person, but mine bloating was def from not the right amount of enzymes which led to too much gas in my gut.

 

[allie1]

I'm the original poster and Allie just had her check up and they switched her enzymes from Creon to Ultrase and they increased her dose. Her docotr said her belly was big b/c of all the gas which meant her enzymes weren't working as well as they should. I'm hoping these new enzymes will help.

Thanks for all of your advice

Amy