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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.

Rachel’s Isotretinoin Log: Month 4

I’m starting my fourth month on isotretinoin (also known as Accutane and other names) and I’ve run into a bit of  logistical problems. Thanks to a combination of expiring prescriptions and me leaving the refilled prescription at home before I left for the week, over the past two weeks I only took the medicine on three nights.

Rachel's hand, 2/7/2014

Rachel’s hand, 2/7/2014

I’ve noticed a real change in my skin over the past few days. It’s harder for me to walk without feeling a bit of pain in the evening, and it’s difficult for me to straighten out my hands. (I guess I don’t have to worry about my wedding ring flying off my finger.) But the most noticeable change for me has been the peeling on my hands. They itch, and, combined with the return of lack-of-flexibility and the “usual” feelings that come along with winter dryness, it’s a pretty unpleasant reminder for me. 

(I’ve also noticed the palms of my hands feeling a bit rougher than before. In the shower this morning, I used the big black nail file on my hands for the first time in a few months.)

I ran out of isotretinoin pills two weeks ago, and my dermatologist (understandably) didn’t w ant to refill the prescription until she saw my latest blood work. (Last months, my triglycerides were borderline high.) The good news is that as of a couple of weeks ago, my triglycerides are back within the normal range. Back in November, I was musing about how much more improvement I’d see in my feet at my current dosage, so I actually wanted to increase my dosage to see what would happen. My previous dosage was around 0.6 mg/kg/d, and so we agreed to bump my dosage up to 0.7 mg/kg/d to see if I would notice any change.

Unfortunately, I only took the slightly higher dose for three days before I left the house, forgetting the pills. My guess is that the three nights at the higher dose wasn’t enough to maintain the level of isotretinoin in my system, so I’m starting to lose the benefit of the medicine. I’ll start on the pills again tonight, and my guess is that I’ll wind up going through a full-body peel again.

Really, I only have myself to blame for this discomfort. I didn’t want to go through the trouble of trying to get my dermatologist and pharmacist to put in a new prescription for me (I suspect that there would be IPLEDGE headaches, so I didn’t even try).

Last night, I spoke with Cookie on the phone. I complained about my feet hurting. “Me, too,” he said. And that certainly keeps things in perspective for me as I grumble about my own skin.

Honey and Healing?

Let’s talk about honey! Honeycomb

There’s an awful lot of hype on the internet. Every day, I see an article or two posted by some well-meaning soul on Facebook, or sometimes a sidebar ad on a news article from someone trying to make a profit on the latest fad. Magic water. Coconut oil. Magic ear candles. Magic Tahitian fruit juice. Chelation therapy. Detox this and detox that. The list just goes on and on.

So what’s real? How can we tell what really works when even things that have real benefits get touted as the latest magic cure-all with all sorts of imagined benefits concocted by someone trying to sell us something?

First clue: Any website that starts off with “What doctors don’t want you to know!!” and a rant about BigPharma is probably not a good resource. Especially if whatever is on the page somehow cures cancer.

Second clue: “Sign up for our mailing list in order to get the magic cure!” Or better, “Buy our book!” And best yet, “It’s lemon juice! Only $96.99 a bottle!” Dude. Lemon juice is $4 at the grocery store. I can get a bag of lemons and squeeze them myself for much cheaper, too.

Sometimes, these claims are out and out snake oil. Other times, there’s a grain of truth that’s been magnified into a magic cure. And once in a while, whatever is being touted actually works.

So, which category does honey belong in? Read on to find out.
Continue reading Honey and Healing?

Isotretinoin is NOT for Children

Last week, Rachel wrote about the warning labels on the brand of isotretinoin (also known as Accutane and other names) that she’s been taking for the past three months, along with Monkey’s interesting interpretation of what one of the warning graphics meant.Claravis (isotretinoin / Accutane) packaging

Both Cookie (age 11) and Monkey (age 8) have noticed the improvement in Rachel’s skin since she started taking isotretinoin, and when we’ve told them that Rachel has been “taking those pills for her skin”, they’ve naturally been curious: should they be taking, them, too?

The answer, in our opinion, is a resounding “NO!” We believe that our children absolutely shouldn’t be taking isotretinoin (Accutane). Here’s why.

Continue reading Isotretinoin is NOT for Children

Isotretinoin Packaging: It’s Not For Who?

Monkey, now eight years old, saw my packet of isotretinoin pills (also known as Accutane and other names) on the kitchen counter this weekend. He asked Jennifer, “Momma, what’s that?”Claravis (isotretinoin / Accutane) packaging

“Well, honey, take a look at the picture. What do you think it’s telling you?”

He scrunched and wrinkled his face as he thought about it. “Um, it means that fat people shouldn’t take those pills?”

“That’s…that impression actually kind of makes sense. And yes, I suppose there might be some medicines that overweight people shouldn’t take. But, no. Those are the pills that Rachel’s taking and the picture tells us that women shouldn’t get pregnant when they’re taking that medicine.”

One of the things that made a big impression on me when I started on isotretinoin was the medicine packaging, and how annoying it was to fill the prescription and pry open the packaging. Read on for why that’s so.

Continue reading Isotretinoin Packaging: It’s Not For Who?

In Case You Missed It: Recently From FIRST

During the past couple of months, have you been keeping up with what FIRST, the Foundation for Ichthyosis and Related Skin Types, has been doing online?

Things are ramping up for FIRST’s 2014 Family Conference in Indianapolis, from June 20-22. FIRST published some new Youtube videos — there’s a long version and a short version — where parents and other affected folks and some of the medical professionals talk about why you should attend (and what to expect). If you haven’t seen it yet, it’s definitely worth the time to check out. We will definitely be in Indianapolis, and here’s why. We hope to see you there, too!

And just yesterday, on the FIRST blog, there was a post from Tracie Pretak and her daughter Bailey about their experience — and inspiration — at prior conferences. Make sure you check out Bailey’s video, too.

Back in November, FIRST took a trip up to Yale to meet with the research team up there, and during the holidays, FIRST published a long writeup about their visit to Yale. In addition to interviews with and pictures of the team, there are also some comments from the patients, including from our friend De Fasciano about her son Evan, who’s affected with harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI). (De blogged about her interview, too.) I know our own family was very busy when this article was first published, and we almost missed it amidst our own holiday scramble.

Continue reading In Case You Missed It: Recently From FIRST

ARCI in Africa: Meet Dakura, Kweku and Amotalé

Dakura, Kweku and Amotale live in Jirapa, Ghana. Last month, a Ghana News article about them received a lot of publicity. Unfortunately, the headline of the article called them “alligator children” and concluded, “The children are seen as outcasts. People around perceive them as evil, but the mother is seeking help for her children.”

While the news article is vague about the “strange skin disease” afflicting these children, based on the pictures of the children and a description of their symptoms, it’s pretty clear to us that the children probably have a form of lamellar ichthyosis, a form of autosomal recessive congenital ichthyosis (ARCI), just like our friends Kyriaki and Jeff. But unlike our friends, these children don’t live in a developed country.

After seeing the Ghana News article, I found the Facebook page mentioned in the video and on Friday morning I interviewed a nurse from Colorado who is in Ghana right now, trying to help these children. In some ways, it is amazing how small our world has become — it was really easy for me to locate and chat with a lady in a dusty village in Africa. Yet at the same time, the world is so large and some problems are so great that I feel powerless, knowing that these kids have been living untreated for ten years or more.

Continue reading ARCI in Africa: Meet Dakura, Kweku and Amotalé

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.


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!