There are many things I never thought to expect as we waited for Mason to be born. Little things that come because of his Spina Bifida. For example it is a constant battle to keep the skin on Mason’s bottom healthy. Because his muscles have been affected by the nerve damage he poops constantly (he’s got low muscle tone in his anus).
Constant poop = skin breakdown. His bottom is red, sore, and sometimes even bleeding. We still have not found a great solution. Right now:
- We change his diaper often.
- We don’t use diaper wipes (the alcohol burns the skin) so instead use cloth wipes with plain water.
- We use a barrier spray (Cavilon No-Sting) that creates a thin film over his skin to help keep bacteria out.
- We put a thick layer of ProShield over that to keep moisture away.
- We’ve tried disposable diapers and cloth diapers (we’re generally a cloth diaper family) and see no difference in how his skin does. That means for sheer cost effectiveness we use cloth unless somebody gives us disposables. Mason goes through 15-18 diapers in a 24 hour period.
- When his skin breaks down badly he spends time with a bare bottom. That’s an event in itself! He’s got to be laying down on layers of towels or cloth prefolds so each time he leaks more poop or pees we can remove another layer so he is on a dry layer. We have to put cloth prefolds over his legs and the shoes/foot brace so they don’t get wet or poop covered. Those need changed if he sprays especially far.
We’re most likely heading in to Myelo clinic to see a skin specialist of some sort next week in the hopes they can come up with something better. I think we’re going to try Desitin diaper rash cream for a day or two and see if it helps any. I’m also researching other suggestions from parents with a child who has gone through this on the Spina Bifida forum I’m on.
What about you? Is there anything you never thought to expect when you became a parent? I would love to hear your stories in the comments!
Z has had issues with diarrhea causing lesser amounts of skin break down and the thing that clears him up faster than anything else is domeboro (the same stuff used for treating poison ivy and other skin rashes). It's slightly expensive, but it works and when you make up the solution it's good for 2 weeks as long as you don't contaminate it. (mixing it in a bottle and simply pouring out what you need it is the easiest way I've found to accomplish this) But basically, you just wet a cloth with it and put it on the skin for 30ish minutes. I usually do it 3-4 times a day. Let me know if you have any questions (the diaper instructions aren't on the package I always end up asking my mom for the specifics when I need to make it)
ReplyDeleteI have two suggestions you could try on his little bottom. Pure coconut oil and/or breast milk. I've used both on sensitive skin with success. The coconut oil is really great.
ReplyDeleteWe have found that vaseline works really well at creating a good barrier to keep the skin from getting wet/irritated. Although, we have never had to deal with the constant wetting/soiling that you are dealing with. We also found that cloth diapers worked much better when we have these types of issues. I wish I had some magical answer for you. I do want to let you know that my children and I pray for you and your family daily. The kids have really enjoyed seeing photos of Mason and it has led to a lot of good discussions about faith and God's love. Thank you for being such an inspiration.
ReplyDeleteWe have had our fair share of diaper troubles. I love the success we've had with Triple Paste (http://www.triplepaste.com/) it forms a good barrier of protection. I've also used Aquaphor sometimes I've used a mixture of these two products.
ReplyDeleteI second the breastmilk comment above!
ReplyDeleteNow obviously animals are very different, but before I quit work to stay home with my kids, I was a vet tech at an animal shelter. We often had cats & dogs come in with constant-pooping issues due to injuries and Spina Bifida (Manx cats have it a lot). We used Desitin as a barrier before the skin broke down--you have to make sure the skin is SUPER dry though before you put it on. If the skin had already broken down we used Silver Sulfadine ointment--it's commonly used for severe burns, and is amazing, soothing stuff.
If you're going to try something new, do it for a couple days to see if it's having any effect before switching to something else (unless, of course, it's visibly making it worse).
Best of luck with yet another unforeseen challenge! What a great wealth of knowledge you will be in your old age! :)
We had trouble with my oldest ds and found that Triple Paste worked well as a barrier. We had tried just about all the other over the counter diaper rash creams before someone suggested Triple Paste.
ReplyDeleteBoudreaux's Butt Paste is the fastest working, even it though it is a bit pricey. My youngest was actually sent home from the NICU with it because of his diaper problem areas. It works great!
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ReplyDeleteI love Butt Paste! (I always find it at Target). Lansinoh also works well.
ReplyDeleteBut I'm sure there is some medical stuff that works waaay better than what we can get over the counter. (When my grandma passed away, there was a full tube of some white barrier cream - don't remember the name - that was used to prevent/treat skin breakdown. My mom offered it to me for my little ones, and when nothing else worked, that always did the trick!)
Triple paste worked great for my daughter.
ReplyDeletePoor little bottom. You've already had some great suggestions, and you're doing all the things you should. The clinic will probably prescribe some things, but in the meantime - using a cleanser with your water that will help balance the skin pH sometimes helps, and that exposure to the air you're giving him is great! If you're buying an over the counter barrier, one with Zinc and antibacterial ingredients will probably work best.
ReplyDeleteAs for parenting surprises - well, almost everything. I pictured hours of sweet and quiet moments in a rocking chair with my baby while we bonded with lullabies, cooing and all that good stuff. Then I had TWO babies, who didn't like being rocked, and were super colicky. And they have continued to surprise me ever since.
Oh, the poor little sweetie. Skin breakdown (but not the frequent poops ;0) is actually a common issue for babies with ichthyosis, too. Babies with EHK (a particular type) often have such fragile skin that they can't wear dipes at all. Peter has a different type, but he did have some issues with breakdown, particularly in the cracks and crevices. Bare bottom is good. Getting it as clean and dry as you can is important. If you feel that the plain water isn't doing the job, you could try cotton balls soaked in olive oil (oil can help dissolve nastiness). We used Aquaphor healing ointment as a barrier cream (Walmart actually has a generic version that's half as much and that we actually prefer). I can't remember if we used A&D or not, it's thick which makes it hard to rub into a sore bottom.
ReplyDeleteI'm linking a booklet here where you'll find suggestions for babies with EHK who have similar troubles that might give you some ideas (just search for "diapers and clothing" in the pdf): http://www.firstskinfoundation.org/userAssets/file/Caregivers%20Guide%202011%20Reprint.pdf
I've seen suggestions for mixing 50% Aquaphor with 50% liquid antacid (like Maalox) for a barrier cream (the antacid helps cut the acid from the urine), but I've never tried it personally. Hope the wound specialist has some good advice for your little guy.
My son has VACTERL syndrome and was born without an opening in his bottom. He had surgery to create an anal opening, but has very little muscle tone in that area. The skin breakdown from the constant leaking was awful! We had some success using Domboro soaks. They were little packets that dissolved in water. We would do soaks twice a day in a little tub and read or play while he did his "bum soaks." I will say that eventually the skin toughens up, but it is so painful until that happens! He is ten now, but I can remember how bad that area can get in a really short amount of time. Your Mason is beautiful!
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