Day 34: Manic Monday!

It's that time again - Manic Monday! Where we talk about disorders, diseases, and misunderstandings.

Today, rather then than talk about myself - I'd like to talk about my son, Noah.

Noah has Acute Numular Eczema. ooooh...big and bad right? Chances are, you know someone who has eczema or whose kid has eczema. But have you known anyone that has been kicked out of a public pool, or had child protective services called on them for burning their child, or being accused of abuse in the wal-mart check out line? And as that person pops into your mind, you are now thinking about a recommendation to give me that worked for them.

Let's see:

Aveeno ("you know that lotion/soap/cream that has oatmeal in it?")

Baby oils/Olive oil/Oatmeal in the bath water ("My grandmother used to put it in a sock")

Wet wraps ("get his jammies wet and put them on him after a bath, did you know it moisturizes the skin?")

Hydrocortizone creams, of all varieties ("My friend has a kid who has eczema and they got a prescribtion for extra strong cream, have you been to a doctor?")

And my personal favorite:

Homeopathic remedies (My sister's friend's brother's wife is a homeopathic doctor and could really help, it's just an enema a day and goats milk)


But guess what -my son is a freak! None of these things, and more, help him.

So let's back up. When Noah was 10 months old, he grew a fungus looking patch on his head. Took him to the doctor, did a biopsy, and guess what? Not fungus. It was no big deal, it didn't bother him. They gave me some oil and sent him home. The oil dissolved it and life went on.

A month later - his entire body broke out in crazy, itchy, infected rashes. His face, his body, his arms, his fingers, his legs, his feet, his toes. Took him to the doctor, which started him on a course of no return. We went through medicines, creams, prescriptions, baths, antibiotics, antihistamines, etc.

Finally, the pediatrician gave up. Sent us to a specialist, a dermatologist. Where we ran another gauntlet of antibiotics, prescriptions, antihistamines, and baths.

So I went to a homeopathic doctor. Who said he had leaky gut. Put him on a strict diet of goat's milk and natural probiotics and enemas. He just kept on getting worse.

Finally, the dermatologist gave up. Sent us to the leading eczema program at a hospital in Denver when Noah was 17 months old. Did I mention this entire time, Noah was not sleeping...or eating....or even happy? He'd scratch himself til he was pouring blood, scream at even the littlest inconvenience.

Went to the hospital for 2 weeks. We got there and were told, by the leading eczema specialist in the country, that this was definitely related to allergies and he would get allergy tested and everything would be fine.

Guess what?

No allergies. At all.

Doctors were baffled. Gave us some ideas on how to treat it but told me there was no cure, and that the things they taught me would provide some minimal comfort.

Fast forward...through another year of living with this child that is miserable all the time...A new doctor moved to the town I lived in, he was insane and ridiculous but knew his stuff. Prescribed us a medicine that actually helped. It didn't cure it, but it did help some. and lo and behold - the shit is 500 dollars for a 3 ounce bottle, and not covered by medicaid.

And so here we are. Living with eczema.

Noah is an amazing, funny, sweet child, with a good heart. I love him to pieces. But he is also incredibly quick to anger, unfocused, and miserably itchy most of the time. He barely sleeps and scratches himself until he bleeds. And there is no cure, no guarantee it will ever get better (as non-allergy related eczema is incredibly rare in small children).

I get tired, overwhelmed, frustrated beyond belief. Some nights, we get no sleep at all. I give up some days and start over the next. My daughter gets ignored for the sake of her brother. Noah gets indulged because I can't even begin to imagine the pain he goes through every day. But he is not going to die, he does not have a life ending disease, and so I know it could always be worse and so I am happy to have what I do have.

I have been judged a lot, and criticized for my son. But I write this entry for you, hoping that maybe the next time you see a parent that looks a little to tired, that is frustrated and ready to give up, offer them a helping hand, or a smile, or a word of encouragement. Because you never know what they are dealing with behind closed doors.