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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

On Polar Vortices and Hot Water

The polar vortex is passing through Virginia, so thankfully we’re going to be warming up soon. (And no, it’s not a liberal hoax.) Temperatures near me yesterday morning dipped down to -10 F (-23 C), with the windchill even worse than that.

On Monday, Jennifer blogged about squawking in the shower and how our kids sometimes complain — very loudly — about their morning bath routine.

In a bit of an ironic coincidence, this morning I did a bit a screaming in the shower myself. I woke up and dragged myself out of bed, undressed, and turned on the shower.

No hot water.

Uhoh.

Continue reading On Polar Vortices and Hot Water

Angry Birds: Squawking in the Shower

I’ve written before about bathtime with our boys who are affected with ichthyosis, but what I didn’t mention in that article was that showering or bathing my boys usually involves a lot of complaining. The nature of the complaint has changed over the years, but they still like to complain. Sometimes loudly. Some days, I wonder how I can still hear!

Our kids as newborns enjoyed their bath. Our kids were so small at birth that they fit into the bathroom sink for the first few weeks! They soon graduated to the kitchen sink, but once they outgrew that, we tried out the baby tub we had received as a shower gift. It didn’t take us long to realize that kneeling over the side of the bathtub was a real killer on our backs and knees, so we figured out a new trick: we put a resin deck chair in the shower and sat with the baby on our lap. Snuggles with mom in the warm water often meant a nap in the shower and it was wonderful. Because we were seated, we never worried about dropping a slippery baby.

But getting out meant cold! And cream is cold! Squawk! Scream! Objection! We rubbed the cream vigorously in our hands to warm it up before putting it on the baby, and others have tried storing cream jars in a baby wipe warmer to get past this problem. But still, cold cream or lotion can be unpleasant after a nice warm shower, which means squawking.

Then they turn into toddlers. Like any toddler, you never know what the day holds. One day, they love the bath, the next, you’re chasing a naked child through the house. Sometimes they don’t want to get in, and other days, they won’t get out! One thing guaranteed to make our kids squawk is washing their hair and scrubbing their scalp, because clearly, shampoo is supposed to be a torture device.

School age gets interesting, too. By age 7, all of my kids insisted that they could manage their own bath. But when the 5-year-old thinks of bathtime, that usually means playing with the toys, and not actual soap and scrubbing and shampoo time. So there was (and still is) a regular argument over whether they wash themselves or whether I get in to supervise. Generally, I end up in the shower, or at least washing and scrubbing from just outside the curtain. And generally, I find myself wondering if today will be the day that the neighbors call child protective services to investigate the screaming kid. So far, so good.

Continue reading Angry Birds: Squawking in the Shower

Rachel’s Isotretinoin Log: Month 2

I’ve been on isotretinoin (also known as Accutane and other names) since the end of October, so I’ve now had a little under two and a half months of experience on the medicine. And during our brief blog hiatus, several of our readers and friends wrote in to ask me how I was doing.

For the past two weeks, we’ve been in Cleveland, Ohio with our extended family. The low temperature last night was supposed to dip down to -9 degrees Fahrenheit (-22 Celsius), and we had a bit over 6 inches (15 cm) of snow overnight. It’s cold, it’s dry, it’s pretty miserable by most reckonings.

Continue reading Rachel’s Isotretinoin Log: Month 2

Happy New Year 2014 — We’re Back!

Hello, readers. Happy New Year from our family to you and yours!

see family 2013

Our family is doing well, even with the colder and drier weather. We have the same concerns as usual — dry, cracked feet, decreased mobility, the need for long showers while travelling. But by now, the annual Christmas trip to visit the grandparents has fallen into normal routines for us.

I think the biggest change from our usual routine has been that my own skin-care routine has gotten a lot simpler, thanks to isotretinoin (also known as Accutane and other names).

For a bunch of reasons, our blog was on a bit of a hiatus for the past month. We’re looking forward to resuming blogging on a regular schedule this year, and our own publishing calendar is full of new articles about ichthyosis and how it affects our lives. (So hopefully our resumed publishing schedule will have more longevity than most resolutions to go to the gym.) Stay tuned, starting tomorrow!

Disney’s New Policy

Yesterday, I wrote a bit about our wonderful experience at Disney with three heat-intolerant children. Today, my friend Shannon Sagona is our guest poster, here to tell us about how Disney changed their pass for disabled guests. Shannon is a personal friend of mine, not affected by ichthyosis, but a mother of 3 and a travel planner with Snapshot Getaways.  Her specialty is Disney vacations for families.  You can find her at whodatmouse.com.

In October 2013, Disney canceled their much abused Guest Assistance Card (GAC) in favor of the new Disability Access Service Card.  The new program is designed to make it harder for people to misuse the system while still giving those that need it a level playing field in order to enjoy the parks.

The system works by issuing the disabled person in the party a card (as always, no proof of condition is needed) complete with a photo. Someone in the party (it does not have to be the disabled person) will hand the card to a Cast Member in front of an attraction (or at Disneyland there are unmanned kiosks throughout the parks) who will give them a return time and will note that time on the card.  When it is time for the party to return to the attraction, anyone in the party may board, however, it is required for the cardholder to ride along with them.  This is a new condition compared to the old GAC.  Only one return time may be held at a time, but once that return time is used or has passed, another may be issued.  The card is good for all Disney parks so there is no need for a separate card for each park. The card can also be used in conjunction with the new FastPass+ system.

Under the new policy, any guest who requires the use of a wheelchair or scooter will not need to have a DAS card as they will always be allowed to wait in the standby line, use FastPass+, or will be given a return time by a Cast Member.  In Disneyland, they are escorted to a separate wheelchair entrance.

The new policy lists nothing about shaded/separate quieter waiting areas, so I don’t know how Disney will handle those situations.  A good deal of Walt Disney World’s queues are already in the shade or indoors because of the grueling Florida heat. As always, Disney is committed to making their parks a special experience for every guest so if there are any concerns or special needs, you can head to Guest Relations for additional assistance.

There are a lot of things that families can do to make sure their families are as comfortable as possible throughout the day.

  • Stay on property so it’s easy to return to your room to rest periodically
  • Take advantage of Extra Magic Hours when the parks are less crowded
  • Visit during the cooler off-season.  Late January and early February are very nice times to visit.
  • Stay hydrated.  Any quick service restaurant on property will give you as much free ice water as you want.
  • Don’t try to do it all.  Know your family’s limits

I realize there are a lot of people who are unhappy with the changes to the system and I can definitely understand that.  I think it’s fair to note that in any major change to a long-standing policy there is going to be a period of adjustment.  I know Disney and I know how devoted they are to their guests, especially children.  I feel confident that they do all they can to accommodate the needs of their guests.

Disney Changes their Disabled Guest Pass Policy

It’s been a few years since we went to Disney, but when we went, it was at the worst possible time of the year for a family of heat-sensitive small people. But you know what? Disney was fantastic.

In 2010, FIRST, the Foundation for Ichthyosis and Related Skin Types, held their biennial conference in late June in Orlando. It was a great opportunity to take the kids to Disney by staying a few extra days, but a lot of families were concerned about the extreme heat and humidity in Florida at that time of year. We charged ahead. At the time, our affected kids were 7, 4, and 22 months. The younger two were still too small to walk long distances and even the older one still tired and had sore feet after a long day.

Upon getting tickets for Disney, we went to the Guest Services desk and they gave us two Guest Assistance Cards. One was “Stroller=wheelchair.” The other was “Shaded waiting.” We had a letter with us from our doctor that explained our needs, but they didn’t even look at it, or even ask what their diagnosis was.  They just asked what accommodations we needed and accepted our explanation with a smile. Our last name and the number of people in our party was written in marker on the cards and attached to the stroller handle.

Shaded waiting meant that we could bypass the part of the line that was out in the sun and jump into a regular line at the point where it was shady. Depending on the attraction, sometimes this meant going in through the exit or the wheelchair entrance. For others, someone was on duty to open the chain at the start of the shaded part. And for some attractions, we went straight into the air conditioning area, although we still waited our turn in order with the people in the regular line.

Stroller=wheelchair made it easy for us to minimize walking and overheating for the boys. It let us keep their cooling cloths, their beverages, cream, misting fan, etc, right on us until they got into the attraction instead of parked with the rest of the strollers quite a bit away. Between these two passes, we were able to spend most of the morning and most of the late afternoon and evening at the park without meltdowns from being hot and cranky, or worse, actually dangerous heat exhaustion.

In addition to the passes, we also did our best to alternate air conditioned rides with things in the heat, walk under awnings in the shade, and even better, walk through the shops instead of down the main street. All the shops are connected into one giant building inside. We could enter a costume shop, wander through an ice cream parlor, keep on going through a keychain and t-shirt vendor and straight into the hot dog joint on the end without ever returning to the heat. Combined with returning to the hotel in the hottest part of the afternoon, we really had a great experience.

Things have changed a bit since then. Starting in October, the Guest Assistance Passes have been replaced with Disability Access Service cards. As this new system rolled out, there was quite a bit of uproar in the news and among friends. Many people have been concerned that the changes will make visiting the park more difficult for families that have certain types of challenges, such as kids with autism that cannot deal with long lines or want to ride a single attraction repeatedly, or kids with heat intolerance, like ours, where a walk through the sun to get a new pass for each ride might end up shortening the day from overheating.

While reading up on the changes, I came across this lady’s experience, and it looks pretty promising. Tomorrow, a friend of mine will be joining us to tell us more about the details of the new system.

How do your regional amusement parks handle your request for accommodations?

The Isotretinoin Grind (Rachel’s Isotretinion Log: Week 4)

Jennifer’s busy dealing with sick children, so now’s as good a time as any for another update on how I’ve been doing on isotretinoin (also known as Accutane and other names).

It seems that my hands are pretty much in a steady state. As I wrote last week, I’m now able to open my hands all the way throughout the day, not just right after I’ve taken a long soak. And washing my hands is now a lot easier. I can wash my hands quickly, instead of needing to soak ‘em for several minutes. Changes to the skin on my hands is enough for me to declare the isotretinoin results to be great for me. And that’s especially true as we’re approaching the cold and dry winter months, where things have been the worst for my skin.

But there’s more than just my hands. I’ve had a lot of peeling on the less-severe parts of my body, like my arms, leg, torso and back. The skin there is now a lot smoother. I’ve had rough patches on my elbows and knees — they’re usually rough enough that I need to file ‘em down with a sharp nail file — and those rough patches are now gone.

The most annoying side effect I’ve experienced so far is itching. I’m ok during the day, but at night, the itching has kept me up. Itching is something I’ve dealt with frequently, but this latest round of isotretinoin-caused itching has been quite severe. I’ve been using cortisone and Sarna (pramoxine) lotion at night, but I’ve found that knocking myself out with some Benadryl (diphenhydramine) works just as well. I’m not sure I want to be using sleeping pills long-term. I’m still trying to figure out whether the itching will persist.

The biggest open question for me, at my current dosage of 40 mg/day (0.6 mg/kg/day), is how much more improvement I’m going to see in my feet.

I’ve been taking the isotretinoin for three weeks now and the skin on my feet has improved, but it’s certainly not as noticeable as my hands. I’ve gotten some peeling on my ankles and on my instep (dorsum pedis). But the bottom (plantar surface) still is retaining a lot of the thick scale.

Over to the right is a picture I just took of my left foot. This is about two hours after getting out of the shower this morning. If you compare it to the pictures of my feet I’ve previously posted (or even the pictures that accompanied our Reddit AMA), you might not see a lot of difference.

Picture taken two hours after getting out of the shower. (c) 2013 confettiskin.com, all rights reserved.

Picture taken two hours after getting out of the shower. (c) 2013 confettiskin.com, all rights reserved.

I think the biggest difference is that the dark pink areas in between the thick scale on my sole in today’s picture are the softer, more flexible skin, and not a painful fissure (like in the previous pictures).

I have definitely noticed that my feet are cracking less often, so the start of the winter hasn’t been as hard on me, foot-wise.

At my checkup with my dermatologist last week, she asked me if I wanted to increase my dosage. I’m going to stay at 40 mg/day for the next month, to see how much more improvement I get on my feet. I think I’m experiencing some slow and gradual change to the skin on my feet, as opposed to the really rapid change I noticed on my hand. But I’m not sure if that’s wishful thinking or just slower action.

Other than the itching, I’ve noticed a few other side effects. My lips are extremely chapped, so I now have chapstick everywhere. And since chapstick tubes are smaller than cream bottles, they seem to have multiplied even faster than my cream bottles. I’ve also noticed that the thinner areas of my skin are more fragile, and that I’m healing slower than before. I scraped up my finger while taking out the garbage on Sunday. It felt like it took less to scrape me up than before, and I noticed that it took a bit longer to heal.

And because of the thinner skin on my hands, I’m no longer able to pick up a hot casserole dish without a potholder. Although really, in terms of quality-of-life, I don’t think that’s a big deal.

I’d be curious to know how quickly other people with ichthyosis — especially those with palmoplantar epidermolytic ichthyosis — have noticed results from oral retinoids like isotreinion or acitretin (also known as Soriatane and other names). That anecdotal experience might help better inform my own dosing decisions. If you have any experience on that front, please let me know in the comments here, via Facebook, or via email.

 

Isotretinoin and Wedding Rings (Rachel’s Isotretinion Log: Week 3)

I’ve been on isotretinoin (also known as Accutane and other names) for three weeks now, and I’m amazed at how quickly I’ve seen results.

But isotretinoin almost made me lose my wedding ring! About a week after starting on the medicine, I had full range-of-motion in my hands and was able to my fingers open throughout the entire day. This was a totally new feeling for me, since normally my hands lock in “flexion” with my fingers curled in, and it hurts to straighten out my fingers.

My wedding ring is a half-size or so too big. We got it in that size in order to make it easier for me to slide the ring over my knuckle in flexion. (And in fact, we had an awkward pause during our wedding ceremony from the extra time it took Jennifer to ease the ring onto my finger.) But with the increased flexibility in my fingers, that too-loose ring started flying off my finger when I made too-expansive a hand gesture.

Wedding ring flying off my finger while seated at my office? Not a big deal. Wedding ring flying off my finger while walking down the street in downtown DC? That’s a problem. Fortunately, I recovered the ring after searching the sidewalk for a few minutes.

You’d think that after having the ring fly off my finger while walking downtown that I’d have learned my lesson. I thought that I could just “be more careful” until I had time to get the ring re-sized over the weekend. But on Friday afternoon, while driving to the train station, I noticed that my ring wasn’t on my finger at all. Uh oh.

Continue reading Isotretinoin and Wedding Rings (Rachel’s Isotretinion Log: Week 3)

Rachel’s isotretinoin log: Week 1

I feel kind of miserable right now, but I’m not entirely how much I should be blaming isotretinoin, also known as Accutane and other names.

I’ve been taking 40 mg/day (0.6 mg/kg/day) since last Monday night, so it’s been one week since I’ve been on the drug.

My skin is starting to peel. My face started peeling on Sunday morning, and my nose feels dry and itchy, even after putting on a few layers of cream. My hands now have several thin spots on them — they feel just like they did back when I was using Retin-A (topical tretinoin cream) back when I was a kid. I don’t have any raw spots on my face or hands (yet), although I have a bit of rawness…elsewhere.

I’m also itching. A lot. I suspect that this is the precursor to a full-body peel. I had the misfortune of getting a whole bunch of insect bites on my lower legs a few weeks ago, and the bites were mostly healed when I started on the isotretinoin last week, but the bitten areas are especially itchy, even though they’re almost fully healed.

That’s about all that I think is directly attributable to the isotretinoin. But I’m feeling miserable for a few other reasons, too.

I’ve been fighting a nasty bug for the past week. Strep test came out negative, but I do have an ear infection and a sinus infection, and last Wednesday night I was coughing so much I wound up keeping myself up for most of the night. I’ve been on antibiotics and prescription-strength cough medicine and fluticasone (Flonase) since Thursday, which have helped a little. (And I even checked with my dermatologist about drug interactions — she said I should be fine.)

Also unrelated, but definitely contributing to my misery of the past week, was the fact that I passed a kidney stone last Sunday (before I started on the isotretinoin). Yuck. And ouch.

Because of sinus pressure and general miserableness, I postponed my usual Friday-night drive from DC to Richmond until Saturday afternoon. The drive, which usually takes me a little under 2 hours, wound up taking me 4.5 hours. I’m sure that added to my misery. I was not a very pleasant person to be around on Saturday evening. Mood-altering medicine, or just an understandable side effect of being stuck in traffic, itching, having a massive headache, coughing and other illness? Meh.

Oh, yeah. Did I mention that I’m falling behind on some projects at work, and elsewhere?

Jennifer seems to have come down with some of the same symptoms, so our family is full of cheerfulness right now.

Playground Trauma

So…. we are eight weeks into school. Three of my kids have teachers new to both the school and the district, so we had to go through the whole spiel back on Meet the Teacher night. The oldest one is finally at the point where he can more or less advocate for himself, especially with his veteran teacher of 18 years. Momo has Monkey’s same kindergarten teacher, so she knows the drill from 2 years ago. It has really only been interesting with Monkey’s teacher, who is fresh out of college.

I have yet to have a week without at least one call from the school nurse. Cookie is still having abdominal issues, which has resulted in a weekly call.  Momo’s great start to kindergarten derailed about a week in when we discovered that he was afraid to use the classroom bathroom because he couldn’t manage the door handle.  I was confused about why he had to go so badly when I picked him up every day. One day, he didn’t make it. When I brought in clean clothes, he explained his problem with the door handle, and that he tried to wait until he got home instead of asking for help. Kitty did…something…to her toe last week and was hobbling around like it was broken. I have no clue what that was about. It seems to have cleared up after a few days. Monkey has had a great year up until this week.
Continue reading Playground Trauma