That Monster Itch

Bebe hasn't been sleeping much. He itches a lot. He is just getting over a double whammy breakout - one after the other - and its beginning to look like the routine is always followed by a bout of big time itch. I remind myself: you can tell when a wound is about to completely heal when it itches.

But THIS itch is causing a lot of aggravation to Bambino. He doesn't get quality sleep at all. Under normal circumstances, a dose of Hydroxyzine (Atarax) keeps everything under control but this is far from ordinary. Last night at midnight when he was screaming and making himself bleed from aggresive scratching, I turned to Doxepine.

It was prescribed by the UCLA dermatologists a couple of months ago when he had another bout with the itch, but I resisted from giving it to him. What parent would drug her baby, right? But last night, I gave in. The fact that Bambino is just recovering from weightloss due to gastroenteritis did it for me. I told myself, he wouldn't be able to gain back the weight he lost of he isn't getting quality sleep.

Doxepine put him out all right, but I was up all night fearing negative reactions. I'm glad it didn't put him out completely. He still woke every couple of hours wanting to be nursed and he still suckled the night away. I guess the drug just relaxed him to the point of drowsiness. Still, I'm hoping that would be the last time i'll ever give it to him.

We saw the Immunologists last week and Bambino had another set of blood work done. I'm still awaiting the results.

Right now, we are just trying to fatten him up like the little Porky Pig.

What Is Netherton Syndrome?

There are a number of sites out there which discuss and explain this disorder. Recently, a new article came up on Wikipedia:

http://en.wikipedia.org/wiki/Netherton%27s_syndrome

But the most comprehensive and accurate description is from a Swedish site:

http://www.socialstyrelsen.se/en/rarediseases/Netherton+syndrome.htm

I keep a printed copy of the Swedish article in my "Bambino medical folder" for easy reference. The illustration above has been lifted from the site.

Another Breakout

I guess some good things doesn't last. But I won't say never.

After two months of exhibiting no symptoms except for the occasional allergic reactions, my little Bambino is having another breakout and this one seemed to have crept up on us without any warning, unlike all the others. It used to be that he would start getting red in little spots around his body and would then progress all over.

I just noticed on Thursday morning that he screams whenever we lift him up, and after examining his chest and stomach areas, I saw it - what the doctors at UCLA termed as "classic netherton."

We always expect an outbreak during the changing of the season. Not that Southern California has "four seasons" like the ones the East Coast is popular for, but just the same, his break outs are more pronounced during those times.

This one is BAD. The last I remember that comes close to this one was his breakout in June, before the start of the summer. Then and now, Bambino's skin is just peeling off of him. And he screams to the touch. In June, it affected his entire body. I remember a solid piece of skin just falling off the soles of his feet. This time, it's just on his torso - so far.

My husband and I are hoping that this bout will disappear as soon as it showed up. We are praying.