Saturday, July 04, 2015

Managing Eczema, 8 years later

When we adopted Sojo eight years ago, we were given this beautiful baby girl.

And a tube of steroid.

We were told she had some eczema on the back of her neck. Little did we know that there was so much more lurking. We put socks on her hands the very first night together, and she did not sleep without socks on her hands until she was almost six years old. This picture is of Sojo when she was with us about a week, and the eczema was already getting way out of control.

The rashes and reactions worsened over the years, and we were at a loss of how to help her. While in the throes of some dark, dark times with eczema itching, pain from so many open sores and no sleep for anyone, I spent hours and hours scanning the internet for solutions. We tried everything anyone suggested to alleviate her itching--bag balm for cow teats, Cetaphil, coconut oil, everything. At one point, we went down the homeopathic route, and the concoction the doctor gave us caused huge clumps of Sojo's skin to fall off. Literally, when she got up from the couch during that period, there would be hunks of skin left. The doctor said she had only seen that before in children living in the slums of Calcutta. Unfortunately, all that skin falling off led to some horrible bacterial infections, so we went back to steroids. In a nutshell, her life (and our lives--it is incredibly hard to watch your kid suffer so much) was pretty challenging for about the first five years of her life.

Yet, here we are, 3 years into a fairly healthy, just-about-eczema-free life with Sojo, and I thought I would share some of the ways that we help her stay healthy, just in case there is a mama like me out there scouring the web for some peace. Oh, and my husband and I have actually slept through the night for more than 3 years now, something we simply thought would never happen. We still marvel at that. I also marvel that when I grab my daughter's hand or touch her arm, the skin is soft and not like that of a crocodile.

Here is what we have discovered through many years of trial and error:


1. I now believe that the bulk of the eczema comes from food reactions, and our pediatric allergist years ago swore that all eczema is food-related, but we resisted against that for years. And, although Sojo has been allergy tested like crazy, some foods that should be okay cause a reaction. My craziest example is marshmallows. There is absolutely no ingredient in the random US brands of marshmallows that should cause any skin reaction, yet every time she eats one, she has an eczema outbreak for more than a week. Obviously, we never eat them as that is not fun for her. Strangely enough, there is one Asian brand at our store that has marshmallows that don't cause a reaction, so those are the ones we eat. Trial and error seems to be a biggie for foods and eczema. Plus, making your own marshmallows is kind of a pain.

This has happened to us with various foods. Making pesto with that artificial Parmesan cheese is fine, but there is an instant reaction to real parmesan cheese. McDonald's vanilla ice cream cone works fine, but Dairy Queen's causes an instant reaction.


2. Climate helps. When we lived in Bangkok, Sojo was downright miserable as the humidity and sweating made the eczema worse. Plus, she had to wear long sleeves and long pants due to scratching, so she was not very comfortable. Moving to the dry, dry desert of Saudi was nothing short of miraculous, and we saw an almost instant, positive change. That being said, we have friends here whose son struggles in the dry and does better in humidity. It's worth a try to see if a vacation to a different climate causes a change.


3. Allergy testing doesn't really seem to mean much. Sojo has been tested different ways, and although the tests show that she has only a tiny allergy to soy, she tends to react to it. She isn't allergic to eggs, and she can eat them baked in something, but when she eats a scrambled egg, she has a reaction. Again, because of the trial and error, we eliminate certain brands and certain foods. Even with ice cream--we'll try a brand to see if it causes a reaction. Some do, some don't. I don't know the difference, but we stick with what we know works. And then we panic when that brand is out in our tiny town.


4. Sometimes, we let her try a new food to see if there is a reaction, and it seems fine. However, she tends to get way too excited about a new food and eats tons of it, which sometimes causes a reaction. We have adjusted in letting her have certain things every now and then instead of on a regular basis as we find that eczema occurs more when there is a bit of a build-up of something in her system.


4. Using steroid to battle the reactions does help. Maybe it's because we are living overseas, but the doctors here in Saudi and in Thailand always tell us how Americans freak out about steroid use more than they need to. When we need it, we use it, and not just a dab like I used to because it made me worried. When there is a reaction, we need to get it right away so it doesn't go out of control.


5. I swear we've tried them all, and, like I said before, we never minded if people suggested something new to us. Eczema is one of those things that everyone seems to know someone who had success with something. Our big success has been Aquaphor lotion, and we lubed her up every single night for years. She is now older, and she hates how sticky it is and really doesn't like it on her, so we have found something new that is light and seems to work nicely: Neosporin eczema lotion. Pretty happy with that so far.


6. Sojo also has asthma, and just this year, we put her on a daily asthma/allergy pill. We think this is also working well for her. She would often get stuffed up right as she went to bed, and this has taken care of that.

There you have it! I sincerely hope this helps someone out there with some strategies. Look at this girl now--wearing shorts, something we never thought could happen without tearing up her legs with itching. She's that healthy!


Anonymous said...

Love this girl so much and what a joy to see her itchy free and enjoying the things she hasn't always been able to do.

Love, Popo

Sharon said...

What a great success story! I remember chatting with you about Sojo's eczema in Bangkok, and you were so heartbroken to know she was suffering. I am thrilled you all have found some ways to keep it under control. xo Sharon