I have a little 2 1/2 year old son.  His name is Spencer and he is one of the greatest joys of my life! ...Though he is HANDFUL to say the least! (This morning he came into my office and told me how much he loved me and he hoped I wouldn't be mad at him when I saw the mess in the kitchen.  I won't go into details now, but 'the mess' consisted of a lot of food in the middle of my kitchen floor, and took the rest of the morning to clean up.  Gotta love the terrible 2's! I'm sure many parents out there can relate.)

Spencer has suffered with minor eczema since he was a baby.  At the beginning of this summer, he had a couple little patches of dry skin on the tops of his feet.  After of few weeks of lotion and Vaseline treatments, his patches of dry skin exploded almost overnight into huge sores.  I took him to the doctor, he found both sores were infected, and started Spencer on an antibiotic.  A few days after taking the antibiotic, Spencer woke up one morning with little sores that looked like chicken pox all over his body.  He itched intensely, and tearfully begged and begged "scratch me mom!"  At first I thought he was having an allergic reaction to his antibiotic.  I took him back to his pediatrician and was told it wasn't an allergic reaction and that I needed to take him to a dermatologist right away.  My pediatrician made a phone call, and got us in to see a dermatologist an hour later.

The dermatologist told me Spencer was suffering from a  case of 'atopic dermatitis', which is a bad case of eczema.  He prescribed an oral steroid to help with the itching and inflammation, as well as a couple steroid ointments to rub on Spencer's skin.  He told me I should start to see improvement within a few days. After about a week,  Spencer was still suffering intensely with itching.  It got to the point where he would cry almost constantly, and tremble in pain when I bathed him, or put the steroid ointments on his skin.  I had a nagging feeling inside that there was something else wrong with him. In follow up visits with the dermatologist, he was concerned that Spencer's exzema outbreak was continuing in severity.   He finally referred us to a special pediatric dermatologist at a children's hospital in the area.  We couldn't get in to see her for a few days, so he had me medicate Spencer with sleeping medication until we could see the specialist. 

Much to my surprise, on the morning of the appointment with the specialist, Spencer woke up with clear skin!  No more sores, no more itching, no more tears.  I decided to keep my appointment anyway. At the hospital, as I described to the doctor in detail what Spencer had endured over the last month, the look of concern on her face grew.  She told me I was describing a textbook case of herpes associated with eczema called eczema herpeticum. It is an infection lasting about 10 days to two weeks. It invades the whole body and involves multiple organs - eyes, brain, lung, liver and others, and can be fatal.  She told me when young children get it, they are immediately hospitalized because the pain associated with the infection is so severe it can only be managed with morphine.

She told me Spencer's dermatologist should have suspected this right away when the steroids didn't immediately help Spencer.  But he didn't.  I don't know why.  As I have searched the internet, I have learned  this form of herpes is relatively rare, maybe that is why his dermatologist didn't recognize the signs.  I feel so heartbroken that my sweet little boy had to endure the pain and suffering he did, because of an incomplete diagnosis. Not to mention the sick feeling I get in my stomach when I think of the tragic outcome (organ damage, and possible death!) Spencer could have faced. Thank heavens, he is okay.

So the moral of the story is... what?  I guess it is this: sometimes doctors are wrong.  How do we know when we can trust them?  Wanting to be an informed mom, I had googled atopic dermatitis for hours after Spencer was initially diagnosed and I didn't find anything warning me about herpes.  Listening to my 'mother's intuition' that something else was wrong, I even asked Spencer's dermatologist on two separate occasions if he was sure Spencer wasn't suffering from chicken pox, or even shingles.  Each time I was assured it was just dry skin.  

That is why I'm sharing my story...if our doctor's diagnosis doesn't quash that nagging feeling in our stomachs that something is wrong, and certainly when prescribed medications and treatments don't work, we need to get a second opinion!  We also need to utilize forums like this website to find information, and to share our stories with each other.

Life is so much better now that my little Spencer has a smile back on his face!  Yes I get frustrated at times like this morning, when he dumps out all the boxes of cereal into the middle of the kitchen floor, and then pours a gallon of milk on top of it all, but I can't even begin to imagine my life without him!