Follow up to Acropustulosis post (yeah, equally exciting)

(photo at end)

First of all, thank you so much for the kind comments on my last post. I truly appreciate it. I didn’t mean to come off as dramatic or anything; like I said, I have some unresolved issues and this just sent me over the edge.  This is not extremely serious, besides the horrible discomfort (I’m pretty sure I was clear on that) and there are worse things to deal with (trust me, we’ve dealt with things much worse than this), but this latest flare up was the straw that broke the camel’s back for me. It was timing, mostly, because I’m really starting to address some of my own feelings at this time – ones I’ve chosen not to think about at length until recently, probably because I haven’t had the time or energy - and because this particular flareup was so bad. Like I said, I’m not dramatic about medical issues; if you know me, you know that. Otherwise, I’d have been huge drama my entire life! Instead, I tend to minimize things. However, it’s hard to do that when it’s your child. During the past seven months, I’ve come to understand what my mom has always said: that you’d do anything in the world to take away your child’s pain and you wish it were you experiencing it instead.

To add to what I said yesterday (or to explain more), when we picked Mattix up at the orphanage, he was truly infested with scabies. Infested is the only word I can come up with that might accurately describe it. I thought that I had written at length about the scabies before on my blog, but I realized that it was on a message board. I think. Maybe I already did it here. I can’t remember; I’ve gone stupid since becoming a mom. If you’ve already heard this or don’t care (and I mean it), skip it b/c it’s boring. 

We received photos of Mattix from the time he was three weeks old during our wait for travel and I was sure that he had scabies on and off over the nine months  (probably more often than not). He also had other nasty things, like what appeared to be horrible staph infections, but that’s not the point of this. When we finally met him, I *knew* he was covered in scabies. It was really strange, though, because his body was COVERED but his face was clear. It looked as though someone had treated his face but not his body. I’m not suggesting that, but it sure looked that way. His face was absolutely clear. Anyway, I had no doubt he had scabies (neither did Karen about her son), but our in-country staff person suggested we wait until we went to the international clinic to have a doctor examine him. She said that sometimes the babies have terrible rashes from the heat and the swaddling/extreme wrapping that they often use in the orphanages and that it might take a few days, skin moisturizer, and A/C to resolve.

We waited two days until we could get an appointment at the international clinic (SOS, I think). The doctor there INSISTED he did NOT have scabies.  So, we still didn’t treat him. After we’d been with him for five days or so, *I* caught the scabies. Mind you, research indicates that scabies is more easily transmitted to people with weakened immune systems, so that would explain why I caught them so quickly (twice) and Ed never did. Anyway, at that point, we treated all three of us, but I was too conservative with the permethrin (generic for Elimite) on Mattix. I was so afraid of getting it into his eyes that I went too light on his face.  I knew better, but I made a poor decision anyway. His face ended up entirely infested; the scabies basically relocated to the “clean” area of his body. It was horrible. I posted very few photos of his face when it got really bad while we were in VN.  When we brought him home, everyone, including our pediatrician, thought he would likely scar. The first thing my dad said when he met us at the airport was, “Oh my God. What happened to his face?”  Welcome home!

It took another three or four weeks to completely get rid of them. We did at least five loads of laundry each day. I stripped all the beds every day, washed ever last towel in our home every day, vacuumed several times a day, and kept everything super clean (if you can’t tell, I’m a semi-neat freak as it is). We had to retreat him a handful of times and that was also horrible. Because the scabies were more concentrated in certain areas after my inappropriately applying the cream (because of my hesitation since we’d been told he didn’t have scabies by two different people I felt like, at the time, would have known more than me), he was in a terrible amount of discomfort. Putting the permethrin cream over the open, scratched up wounds was very painful. One of us had to hold him down while the other did the dirty work. He screamed bloody murder, and at the time, this kid had a pain tolerance like no other. I had to treat myself a few more times because I caught them again as well. (BTW, my having them was NOTHING like Mattix having them. I just want to be clear. I treated myself both times as soon as I caught them. Poor Mattix had been infested for over ten months at that point.) We were thankful they finally resolved because if they had not, we were going to have to move on to the oral treatment, which I did not want to do.

Anyway, that was our prior experience with Scabies, and now the poor little guy has been dealing with this acropustulosis since then. This recent flare up is not isolated; it’s just the worst, by far, and the most painful. Like I said yesterday, acropustulosis is not common knowledge and we’re very fortunate to have our dermatologist who knew exactly what it was. His extensive and frequent international travel to countries where scabies – very, very bad cases of it, not just minor ones where a person receives treatment in a reasonable amount of time – are common, obviously made this easy for him to diagnose. He sees it often, just not here.   

I wanted to follow up to what I wrote yesterday because I kept it pretty general. According to our derm and everything I’ve read (which has been everything I can find), the “information” out there is inconsistent and not always accurate because it’s not common knowledge. While children who have never had scabies can develop it, it is the opinion of our dermatologist that the reason Mattix developed it was because of his ten month plus losing battle with scabies. Furthermore, much of the information indicates that the outbreaks become less and less severe each time. I can assure you that is not true in every case.  They seem to get worse each time for Mattix. And finally, the research available indicates that children usually outgrow it by age three. Again, we were informed, and I found a lot of anecdotal evidence indicating,  children often suffer from it beyond three years of age.  Sometimes well beyond.

Finally, Mattix also has terrible eczema. Poor little guy has scars on his stomach, chest, back and arms from the eczema outbreaks that occurred before we were with him. However, at this very moment, we’ve been fortunate to get it under fairly good control. While I of course wish that he didn’t have to deal with eczema b/c it is obviously very painful and terrible and no mom wants their child to deal with anything uncomfortable, I feel like this is very different.

Anyway, Mattix had a horrible night last night, but by morning, the cream and ointment had worked wonders. I wish I would have taken a before picture; a blog friend asked for a photo so that she could compare Mattix’s condition to her child’s. I sent it to her, but I’m posting it here, too. It is from this morning, about 12 hours after the first application.  It looks a million times better, but maybe it will give anyone who is interested an idea. This is the best I could do. I didn’t have anyone to help hold him down and as you know, this boy never stops moving! I have about 15 blurry ones and this one semi-clear one. His hands actually look worse, but it was easier for me to hold his foot still than his hands with little wiggly fingers!

I started answering questions, but once again, the length got away from me. I’ll post that tomorrow. Again, I wasn’t trying to bi*tch here, but rather to share our experience in case anyone had or has something similar. There are two ladies who had been there before us that helped me tremendously when we came home and were first figuring this (and a LOT of other) stuff out and working through it. You know who you are and I thank you if you’re reading.

Q and A tomorrow, which is also the day Ed has his vasectomy. Good times at our house!