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Monday, January 14, 2013

Brenna's Skin Care, Take 2

Well we've lived through one whole summer and technically almost two winters of having Brenna at home (maybe one whole winter if you put together the half of last year and half of this year?), and it's really interesting to see how the various seasons affect her skin.

Summer felt dry, but in comparison with winter, I'd pick the summer humidity any day. However, it was so unbearably hot last year that we felt like prisoners in the house since even just a few minutes outside would have caused Brenna to overheat. Since she can't sweat, she really can't tolerate hot temperatures for very long at all.

Back when Brenna was about 4 months old, I detailed our daily and weekly skin care regimen...and it's been really helpful for me to look back on and also to point other ichthyosis families to, with the information all in one place. We've changed up our routine just a bit, so here goes an update...

We're trying our hardest not to let Harlequin "hold us back" in whatever ways we can, but nothing we do can change the fact that every day is a never-ending battle against Brenna's skin. There is no "we're really busy tonight, let's skip bath time just for tonight." Her skin needs this daily, sometimes hourly care. Without moisturize, it dries out quickly and cracks, leaving areas that are prone to bacterial infections. Without a daily bath to exfoliate, skin just continues to produce and her body can't shed it quickly enough...


BATH
We've gotten quite accustomed to our one bath a day. Several times, I've had the opportunity to do a morning bath, but apparently Brenna's skin has adapted enough that there isn't a lot of extra skin ready to come off in just 12 hours, so I just let her soak then.

Our daily bath is intense though. We still wait until Evan gets home from work because it is notsomuch fun for me nor Brenna when I am left to my own devices during bathtime. Around 5:30, Brenna hits the water, and about 5:28, Brenna starts screaming, except on the rare occasion that she'll make it through the soaking before starting her protest. The girl will not tolerate her bath.
Who, me? I don't know what she's talking about...

I was worried for a while that it was really painful, but I have asked older children and adults with Harlequin about it, and everyone reassures me that as long as we let her soak and gently exfoliate, it's not painful. But obviously there is some discomfort (we're rubbing layers of skin off of her entire body after all), and at the least, it's really annoying. And some areas of her body are more sensitive than others, like the bottoms of her feet and her hands, and she really doesn't like her face being messed with either.

To exfoliate, we let her soak for a few minutes, and then begin rubbing with rougher washcloths (we're talking $4-for-a-pack-of-20-from-Walmart washcloths). We use Aquaphor baby wash...we've tried other kinds, but she seemed to look splotchier after with those. Aquaphor is just amazing in general, isn't it?

We used to kill our backs bent over in the big bath tub, then we tried the kitchen table, but that was a huge hassle, and then we found this novel idea of a raised tub, which has relieved our lower backs. We have quite the routine now, and it's probably funny to watch since we can do it all without saying a word - Evan starting with her face, while I tackle her legs...and then we move to her feet, each of us takes an arm and then we sit her up so that I can do her back and Evan takes on her head. He is the expert on the rough layers of her head and working around her hair...when I attempt that area, it's not pretty folks.

It can be tricky because while Brenna's skin is "thick," it's also sensitive and can tear easily in certain areas, especially where there are joints, like behind her knees, her groin and where her fingers connect to her hand. It's a delicate balance of removing the extra skin so it doesn't build up there, and being careful not to create a tear in her skin, or worsen fissures that are already present.

To kill any bad bacteria, we add 2 tablespoons of bleach to her baby bath about every three days; it's about the consistency of a swimming pool. If she's been out around a lot of people, we'll definitely make sure to do a bleach bath that night. We add the bleach toward the end of the bath so that it does its job but doesn't irritate her skin too much.

Our dermatologist also encouraged us to try adding 2 tablespoons of baking soda to her bath, and we have mixed feelings about this so far. It is supposed to make the water a good pH for the skin, but it makes her skin seem more "slimy" when we try to exfoliate. We're trying to get used to this.

SKIN CARE
Minimizing infection risk is the most important part of skin care - so we wear medical gloves to apply Aquaphor. We wash our hands or use hand sanitizer before touching Brenna or handling anything that touches her, like running her bath or preparing her bottles, to reduce the risk that bacteria from our skin will be transferred to her skin and cause an infection. I literally wash my hands so much that I rarely wear my wedding ring anymore because water gets trapped under it and irritates my skin on my finger. (I think I need to talk to my own dermatologist about this!)

Moisturizing for Brenna is so very important - probably secondary importance behind minimizing infection risk. During the winter, it is so dry, so we've been running the humidifier in Brenna's room almost constantly, and we've been applying Aquaphor over her entire body closer to every 2 hours...whereas in the summer, we can get away with every 3-4 hours.

We go through a 14 oz. jar of Aquaphor every 3-4 days, so thankfully the company that makes Aquaphor, Beiersdorf, has a donation program for people with skin conditions - though it doesn't completely cover Brenna's needs, it hugely helps offset the cost!

Nails: My absolutely least favorite part of Brenna's care. Her nails grow so quickly and so thick, and they sometimes fuse to the skin. It is a PAIN (both literally and figuratively) to trim her nails but something that must be done at least every few days, or else the nails will really fuse with the skin and also when she is particularly dry and has long nails, she has been known to scratch herself bloody while sleeping.

Ears: My absolutely most favorite part of Brenna's care. Harlequin affects the outer layer of skin, so the only "inner" area that builds up with skin is the ear canals. Brenna doesn't mind getting her ears cleaned out (when they are full of skin, they are really itchy) and since I'm really weird, I find it strangely fun to dig all of the dead skin out of her ear canals. Fun for me + comfort for Brenna = win-win situation in the ear department. I have my trusty tools: tweezers to lift out the pieces of skin from her outer ear folds, a scoop to dig out of her canal and a flashlight to help me see.
We also get her ears professionally cleaned by an ENT every 8 weeks, so that they can go in even farther and clean up to her ear drum. We used to go every 4 weeks, but they said we were doing such a good job at home (thankyouverymuch ;), we could space out our visits. Less visits to the doctor - score!

LAUNDRY
Oh how we love Aquaphor in our house. And I vary between seeing all of the greasy stains that seem to end up everywhere and wanting to cry...and just laughing about it. It's our life now, and it's not going to change, so we're getting better about just embracing the grease and the bleach stains :)

I will say that I have become quite the expert - after many a ruined article of clothing - at both avoiding stains and getting them out. Though dishwashing soap came highly recommended on Pinterest for removing grease stains, it really was no match for the powers of Aquaphor. Shout spray has been much more effective in my opinion! And I tend to wear navy and black most days because they hide Aquaphor stains the best - usually I just pick up a basic tee or two when Target or Old Navy has them for like $6. That way, I don't fly into a rage if they get ruined :)

As for Brenna's clothes, she lives in cotton sleepers - they are the most comfortable and the fabric is breathable for temperature purposes, and they hold up best to the Aquaphor. And really, unless it's for a short time, she has to have outfits that "open" around the middle, whether they snap up, or a pants/shirt outfit that doesn't tuck in, so that we can plug her feeding tube in. And of course, we love us some matching hats - they look cute, keep the Aquaphor on Brenna, keep the Aquaphor off everything else and especially during the winter, keep Brenna from scratching her head like crazy. (In fact, wearing hats keeps her head so moist that I only apply Aquaphor to it three times a day, as compared to six applications for the rest of her body.) Once summer hits, I'm sure Brenna will be rocking her fuzzy head much more often.
Fuzzy head!

Since Brenna eats so much during the day (well, consumes via her tube), she has a lot of...output...at night. Which results in changing her sheets at least 6 out of the 7 days of the week, because the Aquaphor eats away at the diapers and they just don't hold in what they should. You'd think that Pampers would really try to cater to the crowd of children who have to be greased up 24/7, wouldn't you? ;) And of course, the Aquaphor soaks into her clothes, so we change her outfit probably at least 4 times a day. Girlfriend has a wardrobe that would make the Hollywood stars jealous.

So basically what I am trying to say is that I do a lot of laundry.

We soak Brenna's clothes in hot water and OxiClean first - usually just her sleepers and hats, which are coated with Aquaphor. I throw all her towels, burp cloths, etc. in with her clothes into the washer, but I've found if I pre-soak those, they'll become more heavy with Aquaphor than if I just wash them. If the load is particularly greasy, I run it through a second time, but that's rare, because I usually don't want to waste time with it :) I use free and clear detergent (any kind), and some OxiClean in the washer too. After a load of Brenna's clothes, the washer has some leftover Aquaphor remnants, so I run an empty load through to help remove that. (At this point, I'm wondering how long our washing machine will hold up to this kind of abuse...)

When Brenna wears an outfit once or twice, it's usually fine. But her everyday sleepers are more than ready for the garbage after she's outgrown them. I feel sad about having to pitch all that cuteness, but my consolation is that since she grows so slowly, she wears those clothes more than if they had been hand-me-downs between five different kids...

OTHER HEALTH
Over the summer, we slowly weaned Brenna off of her oral retinoid that she started taking when she was just about a week old (called acitretin, it was like accutane). It was great for helping her skin shed, but not so great for the liver. Thankfully now in this period of good health she is experiencing, she is only taking a zinc supplement since her zinc has been low and a daily multivitamin (PolyViSol with iron).

Nutrition plays a huge part in the health of children with Harlequin. Their bodies burn so many calories over-producing skin...and sometimes, as in Brenna's case, they just can't keep up. She currently consumes (through George, our trusty feeding pump) around 33 ounces of breastmilk a day with added formula so that it's 27 calories an ounce instead of 20. That is an insane amount for a baby her age, and she's still not even on the charts for height (but 3rd percentile for weight - holla!)

Another regular concern is temperature. People with Harlequin have trouble maintaining their body temperatures, and some tend to be on the warm side while others tend to be on the colder side. Brenna seems to get cold more easily than she overheats. We run a small space heater in her room at night during the winter, and we have to ensure that our house stays pretty constant all the time. Going outside is trickier, and I'm still learning a lot when it comes to adapting to the outside temperatures - I try to bring  layers that we can add or remove as needed.

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Anddddddd I think I'm done. Is anyone still reading??? This may or may not be even longer than Skin Care, Part 1. This girl definitely keeps us busy :) Hopefully this might provide some helpful information to others in the ichthyosis community (or any med students who are considering dermatology - ha!)

If any others affected by ichthyosis want to comment about parts of your skin care that differ from ours, I'd love to hear them!

23 comments:

  1. I can relate to you on two points. One of my daughters toenails adhere to her skin. Nail cutting is a nightmare. They don't grow as fast or thick as Brenna's, but they still do adhere and it's awful. :( And there's nothing the ped can do about it. He thought she would outgrow it, but she is 8 and still bawls like a baby at toenail clipping time. Secondly, I am weird and would enjoy cleaning out an ear canal, too. Haha That is all a lot of work, but it's amazing how we as humans just adjust. I'm sure it still gets tiring, but it is just second nature to you now and you do what must be done. Love the fuzz!

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  2. Hi there, I would suggest you try fleece sleepers for her in the winter. We have found with our 2 (ichthyosis w/confetti) that it holds in the aquaphor really well, ie, it doesn't soak into the fabric as much, and combined with their body heat, kind of 'bakes' the aquaphor into their skin more (as opposed to being soaked up in the sleeper). Just a tip another mom once gave me! We also use 'spa gloves' to help exfoliate the kids skin. Their skin may not be as delicate as Brenna's, but they make the gloves in all different types of roughness/softness. Just another idea!

    --Jolie, ichthyosis friends in NJ!

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  3. Isn't it so bizarre how enjoyable the ear cleaning is?? Def my favorite part by far, too!! I totally know what you mean about the baking soda, maybe add a little less? Evan is acclimated to baking soda since we have been using it since he was born so when we don't use it, we could tell a there is a big difference in his skin. And btw her nails look fantastic!!!

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  4. You, and your husband, are amazing! Every post I read I marvel in all that you do, and how you are able to put it in words. When I read it I always read it with you smiling.
    Brenna is Blessed!

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  5. Seriously - you are such a rock star! I'm sure there are moments of doubt, but you were clearly born to be the mama for this adorable little munchkin. Kudos to you & yours!!

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  6. I have very bad ezema and have found a cream after many miserable years of dealing with it.(I'm 38 now) It is obtained via dr. perscription or asking the walmart pharmacist. It is call vanicream, you put it on right after your bath without drying off and it abosrbs and moisten's wonderfully. Thought I would let you know.. :o) Keep being a wonderful mom and enjoy...

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  7. It is really interesting to read about Brenna's care. You are such a great writer and I always get a kick out of the way your personality shines through in your posts, like when you wrote "holla!" And that picture in the black towel is just adorable! Happy Monday!

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  8. One of the best things we ever bought was a real otoscope. Welch Allyn sells a student model to medical students for around $100, and that sucker gets daily use for us. Most of our external ear cleaning is with q-tips for the folds, and we use the green loop as well as 50% peroxide flushes.

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  9. Love reading your stories about Brenna. She is a beautiful little girl.

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  10. Thank you so much for sharing all of this - like everyone else commenting, I am so in awe of you & what a wonderful mama you are... in spite of all the challenges Brenna's Harlequin presents, it's obvious that she was made perfectly for your family!

    And in case you were wondering - there are actually several SIU med students who read your blog every day & considering Derm.. and we think you're amazing :)

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  11. Thank you for sharing your life with us... you ALL are an inspiration!

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  12. Wow! Thank you for sharing. I have two boys close to the same age as your little ones. I know how busy you are aside from the skin care routine. You are amazing! P.S I am a closet ear digger ;) I had to laugh when you said that part was fun for you.

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  13. Here's another clever idea we discovered when Josie was young:
    http://confessionsofthechromosomallyenhanced.blogspot.com/2011/01/mic-key-button-friendly-attire.html

    I would send ours to you but I already donated them to the hospital. It works well until they get the motor skills to start exploring their buttons and pulling on the feeding tube. At this point, we keep Josie in a onesie at all times because we don't want to risk her accessing her button and pulling it out (which has only happened once, thankfully!)

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  14. Oh my gosh! And I thought doing laundry for a family of seven was a lot of work ... time for me to quit complaining! Keep up the good work and maintain the great attitude -- and here's hoping little Brenna continues to enjoy her good overall health. She is a darling little gal.

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  15. wow i bet you're exhausted by bedtime! :) Love her fuzzy little head...way too cute!! :) Love checking your blog...beautiful family!

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  16. Great post Courtney! Daily care is certainly time consuming. I feel proud to get my morning shower down to under 45 mins!
    The washing machine thing is tricky for me. I've had 3 in 10 years. The seals on the front loader loosen and the machine leaks. Also the drainage on the machine becomes clogged. In the past this hasn't been covered on warrantee. Very difficult!

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  17. Ps: I love having my ears cleaned by the specialist and also doing it myself! Such a tickly feeling

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  18. I just had a good laugh because cleaning ears (x2) is my favorite part of skin care! And just like you, my tools include a scoop, tweezers and a good flash light. What's funny is my 7 year old asks daily to have her ears cleaned and the baby usually falls asleep during his cleaning. On the flip side I HATE scalp care, has to be the worst part of our skin care! Keep it up, your doing a great job! Your Ichthyosis friends in Washington

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  19. If there are cuts or scratches on my skin, water can sting, so maybe this is a reason Brenna doesn't like the bath.!
    I also find using a rougher washcloth to wash my face with.
    I don't tend to bathe much, instead I shower twice a day. In the morning, to soften the skin on my face before I wash it, so it doesn't split, I put paraffin on it before my shower, and the steam and warmth makes it come off easier with the facecloth.
    I think that's all my tips :)

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  20. Haha, I laughed all the way through the post. All I can say is "Me too!" Our washing machine surrendered yesterday and stopped working. Omri's nails grow half-moon shaped so that's also VERY challenging to cut. Is he the only one aroundhere that hates anything ear-related?
    I haven't worn a ring since his birth, my hands are either wet or creamy or alcoholy and the constant "where did I take it off last?" would drive me crazy ;)

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  21. My grandma used to swear by Amway's Degreaser. I think she used to buy it by the gallon! I'll bet that would be good for degreasing Brenna's clothes.

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  22. Amen to the spa gloves! The only thing that gets mine & my brothers skin to come off without ripping it off. Rough washcloths just don't do it for us. Also, I've noticed aquaphor dries out our skin more. We've seen everything from Vaseline to Lubriderm to baby lotion. The only thing I've gotten to work is the burts bees coconut foot lotion-same consistency as aquaphor and same grease stains (unfortunate). Expensive, I know but it really has helped me. I put it on 3 times a day with a fresh cotton garment over top. And when she gets older, the shea-infused socks with burts bees is just perfect!

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