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So you’re saying my kid is Aquaman?!?

03/08/2012

It’s like the first time Spiderman finds out that he has superpowers….or any superhero for that matter. It’s a weird feeling. The saying “with great power comes great responsibility” replays in my head. Of course, my dreams of taking down my arch-enemies were quickly squashed when the doctor explained that “fish skin disease” was not a superpower. The correct medical term was Ichthyosis. It’s pronounced ICK-THEE-O-SIS. Sound it out. Don’t worry it took me a while too. It is such a rare disorder that Spell Check thinks I spelled something wrong. Unfortunately this was the hand my daughter was dealt.

A month or so after she was born, my daughter displayed signs of minor skin problems. That’s not counting the small jaundice situation she was dealing with at birth. These skin problems seemed normal at first. Redness, dry, irritated skin and flaky scalp. My wife having eczema herself; recognized some of the symptoms our newborn was having. I knew nothing about caring for skin with eczema so it was all new territory for me. Of course everyone and their mother (or grandmother) wanted to give us a home remedy. People always think they have the answer and can make you feel like a horrible parent for not “fixing” the problem….but I’ll save that for a future blog.

As time went on, the condition got worse. Every doctor’s visit was a puzzle. It went from “put lotion on it” to “Nurse tell the other doctor to come in here”. Her skin became scaly and flaky. Her skin would literally peel off. The only way to best describe it would be to picture Goldmember from Austin Powers…except my daughter didn’t eat her flakes. Our doctor said she definitely won “baby award for worst skin of the year”. As new parents, it was heartbreaking to see our newborn like this but we still had to act like nothing was wrong and shower our new daughter with attention. What truly got to us was the uselessness we felt. As much as we wanted to help our baby, we couldn’t.

Finally after months of trying different remedies and medicines we were referred to a dermatologist. As soon as she saw my daughter her response was “ichthyosis”. I, of course, did the manly thing and acted like I knew what she was talking about. Upon further examination, the doctor was almost 100% positive that this was “fish skin disease”. Before I go any further I want to make a suggestion…never look up a diseaose online. If you do, proceed with caution. Trust me. If you look up ichthyosis you’ll see why. I feel so bad for those that have the severe case of ichthyosis. But I digress….

The good news…we knew what the problem was. The bad news…it’s incurable. In other words, our baby would be stuck with this problem for life. So our new skin doc encouraged us to try different tactics to combat the symptoms…along with prescribing different medicines. Our new task was patience. We would try so many different things to make her skin even a little better but nothing made it go away fully. We even had her covered in Vaseline all day…which helped a little but did not last.

It was starting to look like this was something we would have to deal with. The cruel nature of school kids automatically sparks the defensive side of being a parent. What would I tell her when she gets older? How can I still make her feel beautiful with her skin problem? How could I reassure her that it will get better and people will still accept her? How many years would I get for punching a kid? Those are just a few questions that swim in our heads. We would have many dermatology visits before seeing any sign of hope.

We started seeing the hope in the form of clear skin. Slowly it started getting better. Through the dozens of different medicines, something finally worked. I can’t describe the relief we felt as her skin became more and more clear…and smooth. The magical mixture was a combination of organic soap (from Whole Foods), and about three different medicines. It was a complete transformation. The doctors were shocked. The dermatologist was not only shocked but she was able to change her diagnosis to eczema and psoriasis. Now she has been clear skinned for months with only little flare ups here and there, but never as bad as it was.

So I say to any parents with children going through similar issues or worse, it will get better. The best thing for your child is your patience and your love. They need to know you are there to help soothe them. Don’t be afraid to get a second opinion also. We were pretty lucky to have some extraordinary doctors that are very loving. You just have to hang in there. Kids feed off of your strength.

Although it was disappointing for me to find out my daughter wasn’t going to be fighting crime with the Super Friends…I still believe she has super powers. I mean, she would have to in order to get through what she’s been through, right?

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