Just a regular boy

It is hard to imagine, but when I began this blog in 2006, I counted my son’s age by months instead of years.  He was barely walking, communicated only by screaming, and was of the opinion that sleep was for the weak.

Not long after his 2nd birthday he developed what we later learned was severe Atopic Dermatitis.  The next number of years were on odyssey of medical guesswork, wrong diagnosis, numerous specialists visits, funky diets, allergy testing, and frayed nerves.  In the end, we learned that our boy had a disease that affects the top layer of his skin, in so much as his skin is so porous that it cannot hold onto any moisture whatsoever.  The result is severe scratching to the point of bleeding.  His skin when inflamed resembles sandpaper, and he often would develop staph infections.

His outbreaks could be brought on my his allergy to dust mites, grass, nuts, or simply by environment, heat and sweating.  Imagine telling your 7 1/2 year old boy that he cannot get hot and sweaty.  Or run barefoot in the grass with his buddies.  In the summer.  In Florida.

There are several variables his doctors have agreed on.  Pool water is good for his skin.  This one shocked me, but the chlorine actually is beneficial and reduces the staph germs.  In fact, his doctor recommended a 1/2 cup of bleach in his tepid bath water.  The fumes were overwhelming, so we have settled on 1/4 cup when his skin is inflamed.  For a couple of years, one doctor strongly recommended two – 20 minutes tepid baths a day.  Jensen grew to hate baths.  With a white hot hatred.  His present doctor (who he loves mostly because of this) told him that 1 bath a day was fine, as long as he stayed moisturized.

The routine that we settled into over the last number of years was that after a bath, while he was still damp, we slathered him in Spectrum Shortening (this is organic pressed palm oil).  There were also topical steroidal creams that we used sparingly.  For years he was also prescribed Hydroxyzine to stave off the flare ups.  We then dressed him in 100% long sleeved/long pants cotton clothes.  At night, we’d put him in pajamas, and we’d have to soak his cotton gloves and socks in ice water.  He would then get a dry pair to cover the wet pair.  In the worst of times, he’d have to sleep in a pair of wet pajamas, covered by a dry pair.  And to cap off the whole party, he has to be taped into his gloves and socks so that he can’t scratch himself to pieces at night.

A night diaper also entered the fray.  Because if you can imagine a little boy who accidentally wets his bed at dark thirty, and then has to get cut out of all the tape, gloves, and socks, then get rinsed off, moisturizer reapplied, re-gloved, besocked, and then taped all over again.  Followed by a weary mother stripping his sheets and remaking his bed, well, let me just say that Goodnights Big Boy Diapers?  You complete me.

He has been a trooper (for the most part) about the whole ordeal these last number of years.  There were many moments of tears (both his and his parents) and at the worst of times, screaming and crying through the pain, while two weary parents had to listen to their son wail, “Why can’t I just be a normal little boy?”  It broke our hearts.

So many of you have followed Jensen’s journey from the beginning, and have been ROCKS of support for me over the years.  I wanted to give you an update on his progress.

We changed to a pediatric dermatologist (as opposed to his allergist) a couple of months ago.  She has had us try a few different things, and have finally landed on a combination that is working.  She prescribed Fluocinolone Acetonide 0.01% Topical Oil.  This is a mild steroidal ointment that is to be used extremely sparingly.  We use a small capful on his most affected areas twice daily.  We avoided using this medication because of Jensen’s peanut allergy, but the doctor assured us that the protein had been removed from the peanut oil used in the product.  In our desperation we gave it a shot.  And kept the Epi-pen close at hand.  There was no adverse reaction.

We started using this oil about a week and a half ago.  On top of that we use Neosporin Eczema Essentials, which helps to restore the skin barrier.  Then we still cover him in Spectrum, but have discontinued giving him oral Hydroxyzine, and use occasional Children’s Benadryl when necessary.  The results have been nothing short of miraculous.  His skin is softer than I’ve ever felt, he’s not scratching, and since the pores have closed, he is starting to get a tan.

This morning as I was getting him dressed for church, he was admiring his skin.  He said, “Mommy, If I don’t scratch anymore, can I just wear my underwear to bed at night?  And I mean JUST my underwear.  No pajamas, socks, or gloves?”  “Sure, buddy, just you and your skivvies.”  “Wow, then I’ll be just like a regular little boy!”

{Now, if you know Jensen, this is not a possibility.  But still…in his eyes…}

And with that he went to church for the first time wearing normal little boys jeans, a SHORT sleeved shirt, and no gloves taped onto his hands.

I wanted to put this out there because I know so many of you have children who suffer with dermatitis,  eczema, and other skin issues.  It’s certainly something to discuss with your doctor.  We’ve researched the side affects of Fluocinolone Acetonide and will follow our doctor’s instructions to the letter.  He can only be on this medicine two weeks on followed by two weeks off.  This will allow his skin to repair and rebuild the necessary cells needed.  It is our prayer that he will outgrow this disease.

For now I’m grateful to have a happy little boy fly past me wearing nothing but his Hanes boxers and a big grin.