Enzyme Issues

[jonandlindsay]

My 9-month old daughter was diagnosed 4 months ago and was immediately started on Ultrase. She became very gassy and got very bad diaper rash, to the point that we stopped until we got the results of our fecal elastase test. The tests came back and we stared again, gassy this time not so much diaper rash, so we were told to increase her dosage to eliminate the gas. It only got worse from there. She couldn't poop at all and started bleeding from the rash she got. For abotu a month now we have been off the enzymes while the doctor's try to think of something to do. Her weight gain is so slow and she really isn't getting most of the nutrients she needs. We are just looking for anyone who might have had the same issues and can offer any advice or suggestions that we can try or offer our doctors. Thanks

<img src="i/expressions/rose.gif" border="0">

Jon Deveaux

 

[anonymous]

Is Ultrase the only enzyme they've tried? There are other brands of enzymes (i.e. Creon,
Cotazyme (sp), Viocase and possibly others that they could try.
Is she eating regular food by now? If so, maybe keeping grease/fat content to a minimum while not taking enzymes will help her tummy aches, etc.

 

[anonymous]

Our daughter was diagnosed at 2 months and we were told that she would get diaper rash from the enzymes as well (she was on cotazym). Her bottom also rashed so bad that it would bleed and she would scream during a change because of the alcohol in the wipes. First we tried warm face cloths but that left us with a lot of extra, smelly laundry. The cloths are also not as soft as a wipe and the rubbing seemed to hurt her. I went looking for alternative solutions for the rash and found this on another site:

Baby Wipe Recipe
Take a roll of Bounty (no other kind works that I know of) paper towel and cut it in 1/2 so you have 2 smaller rolls, and put one aside for later.
Remove cardboard center from the roll.
Get a covered container 6"x6" approx that will hold the 1/2 roll of Bounty.
Put 2-3 cups water (depending how wet you like your wipes) into the container and add 1 tsp baby wash or shampoo & 2 tsp baby oil.
Place the paper towel in the mixture and let it sit for at least 20 mins.
Remove the towels from the center of the roll and you have a non-alcohol wipe. They clean better and do not irritate the baby's bottom.
If you are going out just tear some off and put them in a Ziploc bag or the travel baby wipe containers.

I now give this to anybody with kids because it is so much cheaper and better for babies. I really found it helped our daughter a lot. In time your childs body should adjust to the enzymes....this is what we were told and it was true for us.

I know that these are really trying times but it does get better. This does not help with the enzyme situation but it is important that you daughter take the enzymes. Our personal experience is that her body will adjust. Just use this wipe recipe and change her as soon as she has a dirty diaper.

Heather

 

[jonandlindsay]

Thanks for the other brand names, we'll bring that up with them. She eats sweet potatoes, avocados, yogurt and bananas; a little melon and other fruit but nothing overly fatty or greasy at all. We'll keep trying. Thanks again

Jon

 

[anonymous]

Hi
We found out our son had CF last June when he was 3 weeks old. He to went through the horrible diaper rash that goes along with starting enzymes. In fact the CF center told us this was normal. It took about a month for his body to adjust and for the rash to clear up. I know it's horrible to go through because they just scream when you try to change them but they only way to work through it is to let it take it's course.
Best of luck
Lisa mom of 4 boys 1 (15 month old) with CF.

 

[anonymous]

Hey guys, everyone keeps talking about this diapper rash, correct me if I'm wrong, but didn't the doctors give any of you's cream? Just that, when my daughter was born they said..." here is this paste and here is another cream use both at the same time and at every changing of the diappers. This stuff was like crack filler you used in the walls to fill holes, it even smelt like it and spread like it. Anyway, my daughter is now four and half and has never even had a small minute red mark on any part of her bottom. Did anyone have cream or was it just us. I know when my little girl was in sick kids, their was a little baby about 8 mths old and his bottom was raw, but his parents were apparently neglectful in taking care of him and custody was giving to the grand ma. However, I didn't understand how he could be so raw but I guess they weren't doing much for his care. I thought that was gona be my life, unable to hold my child cause her bum would be bleeding and raw, I thought my life was over. but the cream was like a miracle
and I felt blessed that I had access to this miracle cream. Does anyone else know what I'm talking about?
N.

 

[anonymous]

my son got really bad rash when first he started enzymes....we change his enzymes to creon and started puting a lot...a mean a lot of cream on his botton...enough so the stools don't touch the skin and change the diaper as soon as he had a bm. it worked very well and finally he gain weight.

val

 

[anonymous]

Yes, we used creams but only after the worst of the rash went away. When their bottoms have sores and are bleeding the cream is not always best. The cream is pretty sticky and you need to rub the skin hard to get it off. When they are that sore it irritates more. We used the homemade wipes until the sores went away and then used the cream to protect her bottom from further rashes/sores.

Heather

 

[anonymous]

Just a note on the diaper rash...my 2 month old had a diaper rash when starting enzymes too! We were given Critic-Aid skin paste from the hospital and it was AWFUL!!! I have 3 tubes if anyone wants them!! We found that no alochol and fragrant free (Huggies Naturals Care) wipes along with Aquophor and Boudreaux's Butt Paste worked immediately!! I am not sure about the emzyme dosage as we are trying to adjust as well.
Good luck!
Blythe

 

[anonymous]

<img src="i/expressions/rose.gif" border="0"> I well remember how bad the rash was when my son started enzymes. He is now 14. I want to encourage you to keep up with the enzymes they are so important! The things that I found worked the best with hiney problems are

1. BALMEX it is available in most stores and walmart etc. It is usually by the other hiney creams like desitin etc. It is really thick but tends to COAT their bottom. I tried many, many different remedies including prescription after prescription ( even specially compunded ones) and this was the one thing that worked!

2. If your child is on antibiotics at all try using some kind of yeast remedy like monastat that is in the cream form. Often times it can be a yeast infection on the outside of the skin. Regular over the counter yeast cream helps! If that doesnt solve the problem then try the balmex for a few days.

3. Last but not least, leave their little hineys exposed to the sun while they nap, it helps to dry things out. I just put a waterproof pad under them and cover it with a towel.

I want everyone to know that it does get easier in many concerns. Now it is just one of life annoyances!

 

[anonymous]

The diaper recipe that Heather gave is INCREDIBLE!!! This works wonders!!! Heather, I think I may have found this from the same site a long time ago. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just made these for another cf family that we just met (their baby is newly diagnosed this week) and it has really helped the infant's rash as well.

Have you talked with your Dr. about trying another enzyme? My son is on Pancreacarb MS8 and these have worked really well for him. Good luck.

Carey