Red Raw Skin Problems
Since shortly after birth, our son Keston has had a recurring skin issue. They are patches of rashes that appear on his skin, sometimes slowly and sometimes very quickly, but equally itchy. They are bad enough at times that all he can do while awake is to itch (which tears up his skin due to his razor-sharp fingernails). It also wakes him up several times a night because he’s uncomfortable and he thrashes around and itches for awhile before going back to sleep, usually with the aid of a bottle from us. This means that we’re still, at 5.5 months, getting up every hour or two to handle him.
It was originally diagnosed as eczema, but was elevated to an, “I don’t know,” status by the head dermatologist at the Forest Park Clinic in Mason City and we were referred up to pediatric dermatologist Dr. Jennifer Hand at the Mayo Clinic, Rochester, MN, to find out exactly what it was, perhaps why it occurred, and what to do about it. So yesterday I took a day off work and we made the 2 hour drive (and tank of $3.60/gallon gas) up to submit Keston to some poking and prodding and hopefully find some answers to his issues.
The trip was essentially worthless and utterly frustrating. The head dermatologist in Mason is convinced it is *not* eczema, yet once we got up there, the Dr. Hand gave him a brief glance and was like, “It’s just eczema. He looks great. What’s the problem?” Which is nice — he was having one of his good days, rare though they be — but it doesn’t give us many solutions for the nighttime itching and his outburst of rashes from seemingly nothing. Also, wouldn’t you do more if the head of the dermatology clinic in Mason doesn’t even know what the hell it is???
Sigh.
Of course, it started off badly — we were about 5 minutes late so we were rushing, driving through Rochester in the pissing rain, trying to find the parking garage, but that was no problem — we got there and checked in fine. However, when I checked in, the receptionist said, “Oh, is that paperwork for the doctor?” indicating the referral letter and the sheet of all Keston’s prescriptions and diet. I confirmed that it was, and she said, “Oh, ok, I’ll take that and make sure she gets it.” I thought that was nice, so we settled down into the very pretty and subtlety-lit waiting room.
But when it came time to see the doctor, we asked if she had seen the paperwork and she’s like, “No, what paperwork?” She sent the nurse after it, but the receptionist had run off to lunch and the nurse just came back and shrugged her shoulders. The doctor seemed unfazed by this and although we said we could wait for them to find the papers, she just said to continue on, she knew what it was and didn’t need to see the referral (which, in that letter, the doctor in Mason explains why he thought it *wasn’t* eczema). So we had to explain what was going on from memory, his entire history and meds/foods/etc. even though we had written it all down already (my wife has been extremely organized with it all, bless her).
So she weighed him (22lbs now, good thing we got the new car seat today) and briefly examined him and then she pulled out a sheet of suggestions for handling eczema and listed everything off, but we’re already doing everything on the sheet so she was like, “Oh, well, you’re doing good then. Carry on.” We did get another different antihistamine to try at night and yet another OTC skin cream but that’s about it. She said that Keston is nothing compared to some of the kids she sees whose eczema is so bad that they stop growing and get sepsis and staph infections. Which is nice enough to know that we’re not an extreme case, but we still feel like the poor sod shouldn’t have to wake up every hour or two at night itching and tearing up his skin.
So we left feeling very much like we had just completely wasted a tank of gas and an office copay. We went off and did some mild shopping and poking around Rochester, stopped to get supper at TGI Friday’s, decided we didn’t like the look and prices on the menu, and instead ended up at Famous Dave’s. As we did I kept getting madder and madder about the situation and now I’m really pissed about it. So I don’t know what to do at this point, but I think we got fucked and someone’s going to hear about it.
I mean…if we’re doing all we can for Keston and there’s nothing up with him but the eczema and so forth, fine. I can deal with that and we’ll keep on doing what we’re doing to control it. (She said most kids grow out of it by 1 years, but then they usually get asthma…joy.) But if it isn’t, I’m going to feel really bad that we were blown off and, at the time, I didn’t have the balls to tell the doctor she was being a daffy bitch (and or hunt down the stupid bint of a secretary and give her what-for for losing our goddamned paperwork).
Sometimes I envy Type A’s ability to speak up at the moment, whereas I always think about what I *should* have said at the time and then kick myself later. Hindsight…GAH!
For those of us around the Midwest, Mayo is touted as being one of the premier health care centres around, garnering the business of presidents and international dignitaries and handling thousands of cases a year. While I realize that my son’s skin problems are probably small potatoes in the the large scheme of things, don’t we deserve a fair whack at the resources as well, especially if we’ve been explicitly referred there?
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