How we're doing, Part II

I didn't mean to leave all two of you with a negative post for so long! Some people have asked, so here's how we're doing now:

Better. LOTS better.

Within a few days of oral and topical antibiotics and some new wound care ideas, Diana's skin was healing up beautifully. The adult dose of Zyrtec seems to be keeping her from being too itchy, and we've moved from using a topical steroid cream every day into using it as a maintenance tool: maybe once or twice a week if her skin is starting to get really red and angry in areas. Mostly it just looks normal, like kids' skin should look. Even the raised, red itchy areas aren't as prevalent anymore. It doesn't help when she's really itchy, but Diana has a new appreciation for what happens if she scratches her skin instead of rubbing or scratching through her clothes and mostly tries to avoid it or ask for help. The spring pollen seems to be affecting her Reactive Airway Disorder (RAD)/asthma a little bit, but we have tools for managing that too, so overall Diana is doing great!

Liam leaped or fell off a sofa when no one was watching and managed to land on his elbow and fracture it, so we had about a week of a Liam in pain and practice wrapping and putting a tiny splint on a tiny arm. His visit to the orthopedic surgeon this week revealed that his fracture is healing up nicely, which we could have told anyone pretty easily since he's been running around and using his hand and arm and making it impossible to keep a splint or sling on him. He doesn't have to have a cast at this point. He does need to keep from injuring the elbow further or else he'll need a pin in it. It's pretty useless trying to explain that to a two year old boy, though. He's already tweaked his injured arm twice today wrestling with his sister, so if he doesn't end up with a pin in his elbow before his third birthday, it will be by virtue of the power of prayer and the grace of God.

How we're doing

Everyone is asking, so I thought I should just write a blog post about it!

Our family has been struggling with some health issues for the past three weeks. Most notably Diana's eczema flared up again in a very serious way. One week it was pink eye for Liam, and then waiting to see if anyone else would get it. As soon as he was done with the antibiotic course for that, he came down with Group A Strep, complete with lack of appetite and a pretty high fever. We feared Matthew was going to come down with one or both illnesses because he was also acting very fussy and sad, but it turned out he was just pushing through 2-3 new teeth.

In the midst of all of that, I was feeling pretty overwhelmed with despair about Diana and I indulged in a Facebook post about our circumstances. After doing that I was overwhelmed again, but with love and encouragement. It was so touching! People dropped off chocolate for a stressed mom (angels, all of you!), gifts for the kids, and had lots of helpful suggestions about Diana. We were also able to FINALLY see a doctor a couple days after and get some tools to help get Diana some relief.

Here's what happened with her:

Diana's ankle Thursday night.

As usual, there was no warning Diana's eczema was going to go downhill. The only contributing factors we can think of are that she had a bit of a bad attitude and we went out to eat Chinese food, so she may have had some food grease on her hands. It was a Thursday, so I put the kids down for naps and Joseph went back to work. Diana started crying from her room and I went in to find she'd pretty severely scratched up her ankles and the tops of her feet. There were a lot of open spots, so I put on Neosporin and some band-aids. Soon after putting her to bed that night, she came out crying to show me that she'd scratched herself open AGAIN in the same area. She was having trouble walking because her feet were sore and stiff. The thing that concerned me was that there were small white bumps that I'd never seen before. I know Neosporin has some cocoa butter in it and since she's allergic to that, I hoped it was just a reaction to the Neosporin. I wrapped her feet in some gauze and tights and sent her back to bed.

 

Friday.

I thought for sure we wouldn't have any more problems because her feet seemed to be hurting more than itching. But of course I was wrong! The very next day at naptime she came to me crying again because she'd scratched herself. I applied Vaseline and more gauze.

We made it through most of the weekend without any more problems. By Sunday night, I noticed many more white bumps and was concerned they might be some unusual infection. Unfortunately, I took to Facebook to find an answer, where parents of other kids with eczema diagnosed Diana with everything from warts to MRSA, so obviously I didn't find any good information there.

Sunday night.

Sunday night.

Monday.

But it was Monday when things got really bad. She was starting to heal up, or maybe it was whatever the white bumps were, but she was really itchy and called to me from the bathroom around nap time. I was feeding Matthew, so I asked her to wait a couple minutes until I put him down and I walked in on this:

It was like a horror movie. I gasped and yelled "Diana!" and covered my mouth in shock. She was already distressed and when she saw my reaction just started screaming "I'm sorry! I'm sorry!" over and over again. She told me she thought I was angry at her. I tried to explain that I was very surprised and angry that she was so itchy that she would do this to herself. She didn't understand the distinction. But really, parents, if you walked in on your child tearing themselves to pieces, wouldn't it push you a little bit over the edge? When I cleaned it up, her ankles looked more like this:

Monday cleaned up.

Monday cleaned up.

 

Really, the only thing I knew to do was put Vaseline and gauze on and tape it up. Obviously this was very painful, especially as it started to heal a little under the dressing. Diana could walk a little on her tip-toes because it hurt to bend her foot. Mostly she sat and wouldn't walk at all. I tried to force her to walk a little bit just to keep things flexible but it hurt her a lot. 

Taking the dressings off was painful too because they stuck to the wounds, so we'd soak them in an epsom salt bath to soften things up and cleanse the area. You can't possibly imagine the amount of screaming that goes into mentally preparing, trying to persuade, and finally forcing a frightened and hurting child into exposing the most painful part of their body to certain pain in the name of helping them. It is to our neighbors' great credit that, despite three home births and many years of Diana screaming at the top of her lungs because of her hurting skin, they have never yet reported us to the authorities. It sounded to all the world like someone was being murdered. She would physically fight and yell "No, mommy, you're hurting me! Don't hurt me! Please! Let me take my leg out! Help me! Help me mommy! Please no!" That was probably some of my lowest times. The only thing that can possibly keep a parent mechanically doing something that is so obviously hurting and terrifying their child is the knowledge that it will be good for them in the end, but it is so difficult. And in the end we'd bandage her up again and beg her not to touch her ankles.

That was another confusing part of the whole episode. How do you deal with someone who is harming themselves? Sure, she's a child. The hallmark of being a child is a lack of impulse control. Certainly her problem is severe, because human beings don't just remove their skin unless there is a larger issue. But at some point it does become difficult not to become hardened and tell them "YOU did this! This is all your fault! Just stop doing it!" It was at once utterly heart-wrenching and also maddening. 

I called the dermatologist and the doctor's offices. We had an appointment to see her doctor that we'd made FIVE WEEKS prior, but it was still a week off and I didn't know what she'd do to herself in the meantime. I begged them, holding back tears, to see if they could find any time at all that week to see her. I told them she had removed all the skin from her ankles, that I was worried about infection, that I needed instructions on wound care, and the nearest time any of them could find was Thursday- three days away. So we took it and hoped we could keep her skin together for three days. We couldn't. Both Tuesday night and Wednesday night she woke us up at 5 AM screaming and scratching with blood running down her feet. More gauze and tape, more soaking her feet, more screaming, more sitting and crying because her feet hurt her all day and night but she just couldn't stop scratching them. At one point she was scratching and sobbing, "I just want God to heal me!" So I got down  and prayed with her and rubbed her feet and she stopped crying. Multiple times that week I'd go into a room and have a small tearful breakdown myself. It was rough for all of us. 

Thursday came and the dermatologist was little help. Oddly, he didn't even ask us to take off her bandages so he could see her ankles. He said there was definitely an infection exacerbating the problem and prescribed us an oral antibiotic. He also prescribed Elidel, a non-steroid ointment that's supposed to be good for children. UNfortunately, even going through insurance and using a coupon card they gave us, a tube was going to be $800. If it helped Diana's skin, obviously it would be worth a great amount to us, but since we don't know how it affects her, there's little incentive to pay that much money. He did give us a couple small samples and they appear to make her skin red and itchy, so I think we'll skip that one.

The next visit was to our family doctor who, as I've mentioned before, I adore. He really seems to listen and care about my kids and have new ideas based on recent research. I showed him the pictures of her skin throughout the week. He removed the gauze and looked at Diana's raw ankles. He was appropriately shocked and horrified and it was just relieving to have someone else know what we were feeling. His inclination was to hit her eczema hard. He told me I could use a full adult dose of antihistamine for her. In addition, he prescribed another antihistamine that tended to have sedative properties for nighttime. He prescribed a topical antibiotic to be taken in conjunction with the oral antibiotic, as well as a moderate steroid ointment (triamcinolone) and a strong steroid ointment (clobetasol). He gave us an entire box of non-stick pads to take home and put on her feet when we wrapped her up. Hallelujah! 

We had one setback that night, and it was completely my fault. I didn't put her in full footie pajamas and tape her up so she couldn't remove them. Instead I bandaged her and put her in tights which she removed in another late-night screaming/bleeding/scratching episode. Thankfully, that was our last one. 

It's now been five days since we saw the doctor and Diana's feet have healed up marvelously! Healthy new skin everywhere and hardly any open scratches at all. She's definitely still itchy, though, especially around the time the antihistamines wear off, so we're on high alert until her skin is less dry and that subsides. She's not allowed alone anywhere unless she's taped up in full footie pajamas until we're sure that she won't take the opportunity of a free and itchy 30 seconds to scratch herself. 

I have so appreciated people's thoughts, prayers, encouragement, and suggestions. Thank you to the people I texted in moments of despair and frustration who only had positive things to say, though I'm not sure that any of them actually read this long-winded blog. I realize that there are many more serious health problems we could be facing, and I'm thankful that the biggest challenge we face is so easily treatable and not actually life-threatening. Situations like these encourage me to get my prayer life and bible reading in order which leads to improvements in many areas of my life. And it's inspiring to watch Diana's complete faith that God listens to her and will heal her. She'll pray about almost anything at any time- from her eczema to her "pet" ladybugs to squished slugs on the sidewalk. 

So that's how we're doing these days! And now you know. We are SO done with being sick for weeks at a time. Bring on summer! 

Christmas Card 2013

Merry Christmas! And welcome to our Christmas newsletter!

Last year there was *ahem* some disagreement about what kind of Christmas cards we should send out and what pictures we should use. (Cute Christmas cards? Do you include a picture with them? How about a newsletter? Can you just put pictures in that? What about an all-inclusive photo card...?) That culminated in not sending out any cards, so if you didn't get a card from us, it's not because we didn't think of you.

This year, though, is different! Hopefully you've gotten one of our Christmas cards. And to save the trouble (and also paper!) of writing and printing off dozens of newsletters that people may or may not care about, I just included a link to our blog where I'd post a newsletter for people who care.

And I see that *you* are one of the caring few! Aww... A special gift for you at the end of this post. If I could figure out how to make chocolate peppermint cookies appear out of your screen, I would.

So here's what we've been up to this year!

Family Adventures

One of the most exciting developments this year was when we found out we were expecting a new baby Sullivan! Baby is due January 24, 2014. We've been very happy with our choices to have home birth with a midwife for our other kids, so we're planning to do that again for this baby. Since our insurance doesn't cover this route, and since ultrasounds are crazy expensive when they're not covered by insurance, we're going to leave the gender of this baby a surprise. We're already prepared with baby girl and baby boy necessities anyway! You can check back on the main blog page to find out baby's name and gender when we do! (For the record, we were both certain this baby was a boy early on, but now we're both leaning toward girl, so anything could happen.)

Joseph in the new car in Lynchburg, VA.

With a third baby on the way and only a small, faithful sedan to our name, we knew we'd have to upgrade to a larger vehicle. Our main requirement was that the car we found would not be even a little bit like a minivan. After a lot of research, we settled on a 2012 Mazda CX-9, a sporty seven-passenger vehicle with a pretty good fuel economy.  After even more research, we found that the particular car we wanted basically didn't exist on the West Coast. The same model and year could be found in larger quantities for $5,000-$10,000 less in places like Texas, Florida, and Virginia. It made the most economic sense to buy a car from one of those places and then drive it home ourselves. Because we have good friends in Virginia, we bought our car in the Washington, D.C. area. With our two adventurous kids, we traveled from Virginia straight through the middle of the country to West Virginia, Kentucky, Illinois, Missouri, Kansas, Colorado, Utah, Idaho, and finally back to Oregon. The entire trip took about two and a half weeks. Along the way we visited friends, stopped in at some fire departments that used Active911 (more on that in the "Joseph" section), took a tour of the nation's playgrounds for leg-stretching and kids' sanity breaks, saw Monticello, visited adorable little towns and local farmer's markets, and learned to be road trip experts. There were lots of charming and picturesque places along the way, but we didn't see anything that compared to our home in the Willamette Valley in Oregon. 

The view from our future driveway.

In fact, we love living in Philomath so much that this year we bought a new piece of property in the same town, only about a mile and a half east of where we live now (in the Neaback Hill area, for those who know Philomath). It's about half an acre in a nicer part of Philomath and on a hillside, so it should have an incredible view of the town, the countryside, and the coast range with Mary's Peak (when it's not covered by clouds) when we finally build a new house. We hope that will be within the next year or two. 

In the meantime, we've still been fixing up our current house. Since buying it in 2010, we (mostly Joseph and his family) have: rewired the house, re-plumbed the entire house out to the water line at the street, removed an old porch and sidewalk, designed and planted a new front yard, poured new front and back patios, insulated and put up new sheet rock in the two bedrooms and hallway, completely torn out and remodeled the bathroom and kitchen, and installed a laundry room and a laundry sink in the garage. Our house is SO much nicer to live in now than it was even when we first bought it! This year, we: installed a new fence, designed and planted a new back yard, put carpet in the bedrooms and hallway, and had someone come to put on a new front porch (that Joseph designed and built) and redo our roof, install new skylights and doors, and replace our icky aluminum siding. The house looks great with the face lift!

Before (top) and After (bottom). Still needs a few cosmetic touches like new paint, but it's already so much better than it was!

Joseph

Joseph during a rare and relaxing weekend at the coast.

Joseph is constantly busy, which is secretly pretty much the way he likes it. There have been some particularly stressful times, but mostly he comes home every day telling us that he is the happiest man he knows and he loves his life. I'd say the year is pretty successful by those standards! 

He is still running two growing businesses. Alyrica Networks is a local wireless internet provider that he helped start about 11 years ago. They've been hiring new employees and have just reached 1,000 customers! However, he stepped away from the day-to-day operations of Alyrica about a year ago to focus on growing his newest company, Active911. Joseph created Active911 when he was part of the Philomath Fire Department and realized it would be much more useful to get information about emergency calls sent to his smart phone rather than listening to a clunky old pager all the time. He designed a messaging system that sent out much more information about each emergency to smart phones and tablets registered to a fire or police department. Emergency responders (firefighters, EMTs, police officers, etc.) using Active911 will get a text alert sent to their phone. Instead of having to hunt through giant map books in their responding vehicles to find the correct address, they also get a digital map in the same text alert that has the emergency location pinpointed, shows information about nearby fire hydrants, etc., and also shows the location and statuses of other emergency responders in the same department so they can see if there are other people on the way. It has been very useful for hundreds of fire and police departments around the country, and has saved some of them thousands of dollars. Instead of complicated and clunky computer systems for their stations and vehicles, they just need some smart phones or tablets and to pay a small fee for the Active911 service each year. Active911 is even used internationally! It's rewarding to Joseph and all his employees to know that they're building a business that is helping people and saving lives.

When he wasn't busy with work, Joseph and his coworkers and some family members joined a local city slow-pitch softball league. Even though he's athletic, Joseph has never played organized sorts before and really enjoyed the experience! He's also gotten pretty good at lap swimming while working out. To relax (as much as someone who loves working can relax), he visited New York City and San Jose del Cabo, Mexico with friends this year.

Nichole

Me and eight months of New Baby

This year I've been keeping busy being the pregnant mom of two very active little ones. It turns out you don't need much more than that to take up all your time. However, I've also been part of an International Moms Group that meets near the Oregon State University campus every week. Most of the international moms are here because their husbands are studying for advanced degrees at OSU and they are new to the country or at least Oregon. Every week we hang out and hear a speaker talk about a child health-related topic while the kids play. Occasionally we have events like cooking demonstrations and holiday parties that are lots of fun. Diana and Liam have been enjoying playing with the other kids (usually between 1.5-2 years old). I also got to take a solo trip this year back to see my friend in the D.C. area and her brand new baby!! It was so much fun seeing them (and holding a warm, snuggly baby!), but a very strange experience to be away from Joseph and the kids for four days.

Diana

Our Diana Bean turned three years old this year! She is a smart girl who loves learning, talking, reading, singing, and alternately spending quiet time by herself and spending quality time with people. We have our struggles- in particular, her eczema, which we are still trying to cope with after seeing multiple doctors- but in general, she is a happy and healthy three-year-old. She knows her alphabet well and can identify all the letters in a word and even sound out small, simple words like "dad," "cat," "mom," etc. I think she will be excited to start reading. She has already memorized most of the stories in her books anyway. She likes the library, playing at parks, and roughhousing or going on walks and stargazing

Diana the flower girl

with her dad. She is beginning to be interested in Disney Princesses (Yessss! Soon I'll be able to justify a trip to Disneyland!), but still loves trucks, trains, and robots. Some of her favorite books right now are, Good Night, Good Night, Construction Site and Steam Train, Dream Train. This year, Diana got to be the flower girl in a friend's wedding, and what an adorable flower girl she was! She loved her "princess dress," and still talks about weddings. According to Diana, a wedding is when you get married, but most importantly, there is a party with cake and FIRE! (Her fire obsession may lead to a career in the fire department like her daddy.) 

Liam

There never was a louder, goofier, happier, more energetic or people-loving boy than Liam. He is incredibly good-natured. He's a year and a half old now, and running and roaring around everywhere, creating happy chaos. He doesn't speak in sentences, but he knows a lot of words and communicates well by using the words he knows and his incredibly expressive face. Mostly he loves to laugh and be with people. Currently he has a small obsession with Elmo and Cookie Monster. He also likes for people to read books to him, but mostly if there are lots of sound effects and hand gestures to accompany the story. He loves his sister, and he loves babies. I hope this will still be the case when the new baby comes along. Right now he has three baby cousins under six months old, and two of them live nearby. He loves those babies. I think he'll make a good big brother.

Our 2013 was full of growing families, growing businesses, travel, home improvements, and happy, busy times with friends and family. I don't think you can ask for much more than that. We have been incredibly blessed. We look forward to 2014, especially meeting the newest member of our family.

And now, for you caring few, a selection of hilarious pictures that we didn't include in the Christmas cards because there was always someone or other who didn't look quite right. Enjoy, Merry Christmas, and have a happy New Year!

This picture would be adorable... if Liam didn't look like he didn't trust the photographer...

Great picture of mom and dad. Diana looks very relaxed and Liam again looks like he is suspicious of everyone.

And, for what it's worth, a picture showing that Liam was actually happy during the photo shoot.

The ins and outs of eczema

People who are concerned by Diana's eczema will occasionally ask me if we've figured out what causes it yet. Yes, we think we have. After many weeks of frustration, I sat down the other night to diagram what we knew about Diana's eczema. This is what I came up with:

No problem, right? 

• Topical Allergies: Her topical allergies include: cocoa butter, sunflower oil, coconut oil, anything with fragrance, animals (dogs, cats, horses, etc.), carpets and upholstery (possibly due to the soap/chemicals used on them?), and a host of other things we haven't identified yet, including some ingredients in different brands of "free and clear" laundry detergents. Basically, any time we leave the house or see friends and relatives, Diana needs a bath/shower/to be wiped down with a warm, wet washcloth that has been washed in Arm & Hammer free and clear detergent. 
• Dry Skin: The moisturizers we use to help her dry skin can't have anything in them that she might be allergic to. So far, that leaves Aveeno Eczema Therapy Cream (when her skin isn't too scratched up) and Vaseline.
• Yeast: Even if her skin is generally doing well, sometimes yeast may colonize her skin which makes her itchy. We need to give her bleach baths occasionally just to keep her skin clear. Unfortunately, chlorinated water dries out skin. 
• Sugar: One mini marshmallow or even one M&M doesn't seem to do much, but give her an entire cookie and Diana's hands instantly go to her face to scratch. Somehow she reacts to too much sugar. 

I forgot to add that it's important that her skin can breathe, so she has to wear all-cotton everything all the time. 

Also, we have no idea where her food allergies figure into making her itchy. When we tried an elimination diet, nothing seemed to really make her skin much better. We're pretty sure that the allergies that affect her skin are mostly topical, not food-related.

The factors that contribute to scratching are, if possible, even harder to address because some of them are just a consequence of being an almost-three-year-old. Skin irritation is probably the easiest thing to control. We have to make sure her clothing isn't at all scratchy or too tight (unfortunately, the tights we use to keep her from getting at her ankles and knees are tighter than nice, loose pants). But how do you keep a child from being bored?? I think it's healthy for kids to be bored sometimes. It allows them the freedom to develop some creativity and use their imagination. And while I take care of a house and, soon, two other kids, I can't be Diana's full-time entertainer. However, when she's bored, she'll often default to scratching, which makes her itchy. Another big factor is stress, which also seems impossible to control. The world is a new, uncertain place for toddlers, and when she's uncomfortable with a situation, Diana will often scratch. The world can also be a frustrating place when you figure out there are things you can't do. Trying to mold a smart, frustrated, itchy toddler into a good and happy person results in a lot of angst for both parties, and a Diana who is unhappy about being sent to her room or told she can't do something will invariably scratch. In fact, more commonly, I can't allow her to go to her room or out of my sight at all because she will pull her gloves or tights off and scratch at the slightest opportunity.

Emotional Eczema

While I was doing some recent research about eczema, I came across two interesting articles. The first was entitled "Psychosocial adjustment in preschool children with atopic eczema," written in 1993 by three researchers at the University of Machester and published in the Archives of Disease in Childhood. According to the abstract, "The psychiatric adjustment and mother-child attachment in 30 preschool children with severe atopic eczema was compared with 20 matched controls. Patients with eczema had a significant increase in behavior symptoms, with significant excess of dependency/clinginess, fearfulness, and sleep difficulty, but there was no difference in the security of attachments." (I don't know if Diana is overly clingy or fearful, but sleep is definitely an issue. She wakes up usually between 3-8 times each night, and I don't know how much of it is because she's uncomfortable and itchy, but it definitely messes with her sleep cycle at a time when she needs to be getting lots of sleep.) " In relation to the mothers of the children with eczema, the abstract stated, "Significantly fewer... felt supported socially." That's been one of the biggest emotional challenges for me: I feel so very lost and alone. I know I have Joseph to talk to, but Diana's eczema is like no one else's eczema. Sometimes I just wish I could talk to another mother who understood the physical and emotional challenges and the confusion and the frustration and the hope and the anguish. Talking to other people sometimes helps put struggles in perspective, and I don't know of any other moms who are dealing with anything remotely like this. Diana sticks her hands down her pants to scratch or sometimes even removes her clothes and people laugh and tell me my daughter is walking around half naked, but they never seem to notice that I am never laughing too. The consequences of Diana scratching can be setting her skin back for days, and it results in enough unhappiness for everyone in our family that it's really no laughing matter. One night, we didn't use athletic tape to hold Diana's PJs together because she had a cold and we didn't want to restrict her breathing at all. I found her in the morning with her pajamas removed and also all the skin from the backs of her hands. Regardless of how comical people find the situation, I will never laugh when Diana scratches, since this is the result:

The abstract continues, "Significantly more [mothers] felt particularly stressed in relation to their parenting and less efficient in their disciplining of the affected child. Child behavior problems and maternal distress were significantly more common in the more severely affected children." Yes! There's no way to know how much of your child's bad attitude is just being a toddler and how much is actual excusable distress due to their discomfort. I know during allergy season I'm a bear because I can't think or focus on anything else when all the soft tissues in my head are itchy. If life was like that for me every day, I'd be grumpy all the time too! Lately, every day for Diana has been a bad day, and almost every minute of those days is filled with unhappiness. I don't want Diana to be faced with sadness and frustration all the time.

The second article was "Stress in mothers of young children with eczema," published in the Archives of Disease in Childhood in 2007 and written by three authors with The Children's Hospital at Westmead in Sydney, Australia. They evaluated the parental stress levels of mothers of children younger than 6 years old (the average age was 2.8 years) who were receiving care at the hospital for management of eczema. If you have the stomach for scientific papers at all, I'd suggest you read it, because almost everything that they found seems true for me. "Mothers of children aged 5 years or less with eczema exhibited significantly higher total stress scores as compared to mothers of normal children and children with other chronic disorders such as insulin-dependent diabetes and profound deafness. Stress scores in the parental domain did not differ significantly from the scores of parents of children with severe disabilities such as those requiring home enteral feeding and those with Rett syndrome." That seems like a pretty profound result. I don't want to use this to enable my own pity party, but taking care of a child with eczema is incredibly stressful. Just maintaining her skin quality is hard. It seems like everywhere, everyone, and everything negatively affects Diana's skin and we're only safe when we're at home. When we take steps to fix her skin or try new coping methods, it's way more stressful. I know I've said it before, but there's nothing as hard as seeing your child in complete misery just ruining themselves physically. Diana is both the victim of eczema and her own worst enemy. I wish there was some way for me to describe the sadness, the pity, the frustration, the confusion, the hopelessness, the guilt and the alone-ness that has driven me to tears on a daily basis for the last few weeks! Stress in mothers of young children with eczema? Yeah, it's bad. I guess I'm happy that anyone cares enough to write a paper about it at all. 

/Venting

Here's what I know: Diana's eczema is essentially dry, sensitive skin that is affected by a host of things, some of which we don't understand and some of which are mental or developmental or closely related to her personality. There is no one cure for her eczema. We cannot fix Diana's eczema.

The only thing we can do is try to maintain the best skin quality we know how. Occasionally we have to adapt our coping methods to new information, incorporating new suggestions from her doctor, and the fact that her eczema changes as she gets older. It's widely acknowledged that sometimes eczema flares up for seemingly no reason, and I think we're in the midst of a crisis like that now. We're slowly figuring out ways to bring it under control and see our happy, carefree Diana more often. But ultimately, we're anticipating years of almost-constant care for a child with special skin needs. I think a lot of my stress has been fighting the idea that this is the way life has to be for Diana. I'm just starting to accept that the constant itching/scratching battle and all the care that goes into maintaining her skin might be her status quo for years to come. I don't like the idea.

I also know that God is in control. God cares for me and our family and our little girl. If we keep turning this horrible experience over to God in prayer, good things will come out of it. If we keep asking for wisdom, it will keep coming. It's difficult for me to remember those facts when a trial isn't one shocking event, but instead a wearying lifestyle. I think God knows that too, though, and he has shown me that's he's with Diana and me even in the tiring and miserable journey through her eczema. 

The Heart of the Eczema

The title of this post is misleading, because eczema has no heart. If it had an embodied form, it would be a soulless monster, preying on anyone, including the young and the helpless.

The past week has been filled with moments that just make me want to curl up on my bed and cry. Today especially was incredibly discouraging. There are few things more emotionally stressful and draining as a parent than seeing your child suffering, and there has been a lot of physical discomfort for Diana this week. I hate hearing her scream during the rare bath/shower times, or when I'm putting on a moisturizer that I know is good for her. I hate hearing her cry and beg me to stop because it hurts.

The Plan

We've declared war on her eczema again. It seemed to get worse in the past month, so Joseph and I did some brainstorming and came up with some plans. Everyone's skin in the house got drier once the temperature dropped and the heater started coming on, so we've been putting on the kids' humidifier every night. Also, we theorized that 60% of Diana's skin problems have to do with the fact that she scratches, leaving lots of scabs that are dry and itchy or open wounds that are always in danger of becoming infected. So we committed to stopping the damage done by scratching with fingernails by covering her hands EVERY time we see her scratch. We've got a couple pairs of lightweight cotton gloves from The Allergy Shop in Australia that we use, or if we're in a pinch, we just pop socks over her hands. Joseph sewed one pair of gloves onto an old pajama shirt Diana had so that we can use it when she sleeps without her pulling the gloves off. We put that on under some of her footie pajamas (because even with gloves on, she'll still peel off pants and diaper and scratch if she has the opportunity) and then put a band of athletic tape around her chest so that she can't retract her arms from her sleeves (something she perfected about a year ago) and scratch inside her PJs at night. Additionally, at our doctor's suggestion, we've been giving her 1/2 tsp Children's Liquid Zyrtec every morning and at night as needed to try to make her less itchy.

The Results

It was a bit of a rough transition to wearing the gloves during sleeping times, but now Diana asks for her "glove shirt" and is comfortable with putting her fingers in the fingers of the gloves herself. That seems to make it easier for her because she knows she mostly still has the use of all her fingers and isn't too limited in what she can do at night. It was (and is) much more frustrating for Diana to get used to being forbidden to scratch during the day. I hate to keep her from doing that, but she does so much damage to her skin and usually leaves herself bleeding. We stress that she can scratch with her gloves on all she wants or she can rub the itchy spot with her gloves off. Usually we have to revert to putting the gloves on. Understandably, it's frustrating for Diana, especially as she healed up and the scabs became dry and itchy. Her frustration has manifested in a lot of un-Diana-like behavior: blatantly tormenting her brother, not listening to mommy, being surly and whiny at every opportunity, and saying things like "I don't like you, mommy," "You're a naughty mommy," and "Go away, mommy, I don't want you here." I know that she doesn't mean it when she says that, but it's still a little disheartening. I've tried redirecting her to say things like "I'm frustrated/mad at you," because that seems more accurate, though I'm still not sure I like that.

Happily, though, as she was thwarted from scratching, her skin did heal up! Kids heal so quickly (when they let the healing happen), and soon her skin was free from scabs and scratches. I could use our Aveeno Eczema Therapy Cream on her without the alcohol hurting her skin! She began to willingly take baths and showers and just sit and enjoy them because the water didn't hurt her skin! Hallelujah! If you'd ever had the misfortune to be around our house at bath time, you'd know this was a huge improvement. Soon all that was left was, essentially, the heart of her eczema: dry skin with raised, irritated red patches.

We overcame the problem of scratched and bleeding skin and now we're left with just the eczema, which is no less confusing. Her dry skin is irritated by something, and we somehow need to combat both the dryness and irritation. We tried an exclusion diet with no noticeable results. We noticed that whenever she has sugar (including white flour), her face flushes red and she immediately begins scratching, so we tried removing sugar as well and haven't noticed any changes in her skin quality or itchiness levels yet, but that can supposedly take up to two weeks to get out of her system. To allow natural oils to accumulate on her skin, we cut out showers and baths and only did wipe-downs on her hands and face with a warm wet rag at the end of the day. Unfortunately, we encounter a lot  of irritants in the course of a day even just seeing friends, relatives and animals, so I'm not sure this did a lot of good either. Additionally, the dog has been in the house more often since the nighttime temperatures dropped to freezing and we also got a new couch, which may be covered in cleaners that irritate her skin. There are no limits to the amount of things that could be irritating Diana's sensitive skin!

And the new plan

A sweet, sweet friend saw some of my posts about Diana's skin and brought over some Arbonne Baby Care products for us to try. I was so touched by how thoughtful she was! Diana's eczema problems are like no one else's that I know, so it feels like a very lonely, frustrating battle sometimes, but it is encouraging to know that people notice and care, including you, lone reader. It makes me nervous to try new products sometimes, but I've never heard of Arbonne products and haven't tried them, so we're giving them a shot. 

Diana's unhappy skin after unsupervised scratching.

Diana's itchiness and attitude problems reached new lows today. Every minute or so she'd scratch uncontrollably, I'd pop the gloves on, she'd throw a fit, eventually calm down and I'd take them off, then she'd go right back to scratching. The cycle went on all day, with frustration misdirected at me and Liam. And do you know that it's actually impossible to reason with a toddler, or explain that their own scratching hurts their skin? At naptime, I checked on her every couple of minutes for almost an hour, taping gloves back on and putting clothes back on when she'd pulled them off. At last, it seemed like she was just falling asleep and it was quiet in the kids' room for about an hour. However, when I finally went in, I found her completely naked and scratching herself with no gloves. She set her skin back so far with this one incident. So we figured this was a good place to reevaluate and start a New New Plan. 

In the New New Plan, the dog lives outside exclusively. Diana's gloves will stay on all day except during meal times. We're going to shower every night, even if we don't use soap all the time. We will be using Arbonne Baby Care Hair and Body Wash occasionally in the showers and moisturizing with Arbonne Baby Care Body Oil and sealing in the moisture with our tried-and-true Vaseline. When her skin is a little less scratched up, we may try the Arbonne Baby Care Body Lotion as well. She still gets Zyrtec in the morning and at night as necessary, we're still keeping sugar as low as possible and substituting whole grains whenever possible. Humidifier and glove-shirt go on every time she sleeps. 

After the day's scratching, tonight's shower was, predictably, horrifying. It was also a huge emotional challenge as a mom to slather Diana with the body oil while she curled into a fetal position on her side and begged me not to put it on because it hurt her. HOWEVER, I did notice that as soon as the oil and Vaseline were on, Diana's scratching stopped. Under normal circumstances, Diana's hands will scratch away at her hot spots, even with gloves on, especially when she's distressed. (This is another complicating factor, because if she's ever startled/ uncomfortable/ tired/ hurt/ frustrated/ nervous/ etc. she will immediately start scratching herself even absent of other skin irritations.) Instead, her hands just stopped and she chatted with me. After getting her dressed, I asked her suspiciously if she was itchy and she said no, so we skipped the Zyrtec tonight. I'm curious to see what her reaction is to the new products after a few days of use. Her skin did feel extra soft after putting on the oil, and hopefully the moisture gives her some relief. 

Clarification

To be clear, a lot of nice people that I love have sweetly and gently suggested that the dog might be the problem because they're sweet people. I don't mind that. Goodness, I couldn't have even begun to imagine all the things a human being could be sensitive to or that could cause eczema, so I depend on people's ideas and suggestions to know where to begin treating Diana. If there's one thing I've learned for certain, it's that everyone's eczema is different, so it becomes a little disheartening that avoiding (or using) the same foods, soaps, and lotions that completely cured other people's eczema hasn't healed Diana's, and I suppose that leads to a good amount of skepticism whenever people give me suggestions. But hey, the people who gently suggested that she might have been allergic to the dog  ended up being right in the end. ;)

I still don't know what this means for Diana's eczema. We'll go see the allergist again soon. Her skin has on its own gotten much better. Sunshine and the Aveeno Eczema Therapy Cream seem to help with that up to a certain point. Right now it's just incredibly dry- covered with layers of super dry skin that's almost like light sandpaper. It's not very red, though, and it seems to be healing overall. These breaks are always so nice. She does still seem to be moderately itchy, but it's not as bad as it has been. She's also getting to the age where we can begin to suggest substitutes for scratching. We ask her to rub her skin instead of scratching it. Or if we can, we rub her legs, neck, or wrists ourselves and she seems mostly satisfied with that. I'm hoping there are very few more years that her eczema will be a serious problem. Growing up does seem to help even just a little bit.

The results are in... Part II: No, really!

I'm sorry I cut you off with the last post before revealing anything. I'm very wordy in print.

If you skipped the last post just because you saw there was a Part II and guessed the surprise ending, you are a perceptive but terrible person. I bet you peek at the endings of books too.

We've tried Cetaphil, Cetaphil Anti-Itch Lotion, Burt's Bees, Cerave, normal Aveeno lotion, and Aveeno Eczema Therapy cream on Diana. We've tried coconut oil, sunflower oil and even emu oil. (I still want to know how they extract oil from emus.) We've tried Vaseline and Aquaphor. We've tried 1% and 2.5% hydrocortisone, as well as "moderate" and "strong" topical steroids, whose names I don't remember. This list seems short, so I know I'm forgetting some, but basically, we've tried everything we can think of. I've changed our laundry soap and household cleaners multiple times, as well as all my soaps and cosmetics. Mostly, we've had two and a half years of red rashes from allergic reactions to new soaps or moisturizers. The only thing that seems to help a little is Aveeno Eczema Therapy Cream, but since it has some alcohol in it, we can't use it where there are scabs on Diana's skin. When her skin got bad a couple of weeks ago, that was basically all over her body.

The allergy clinic gave me the results of Diana's blood panel over the phone. Hallelujah! Hooray!

And they were as follows:

Diana had a strong reaction to: cats, dogs, and peanuts.
She had a moderate reaction to cow's milk and egg whites.
She had a low reaction (which may not manifest as a sensitivity at all) to soy and tree nuts.

My first reaction was relief. Thank goodness! We had some idea of what we were dealing with, and there was scientific evidence to back it up. I've always suspected cow's milk and egg whites, but couldn't get a strong correlation between those and her eczema during our elimination diet. My second reaction was: "Rats." Only partly because we have a dog in the house. My motivation might have been a little selfish. I don't like being told "I told you so." People always ask, "Could she be allergic to the dog?" and it drives me nuts. Usually they do it gently, as if they're breaking bad news to me. As if I hadn't considered she might be allergic to the giant walking allergen in our house? Or as if I was so emotionally attached to the big dumb (but sweet and loving!) dog that I would have any kind of pang of conscience over throwing her out if I knew it affected my daughter's health? We've never had any concrete evidence that Diana's eczema was related to the dog. So I feared that the first reaction I would get would be "Well, I told you so," and I knew that the question immediately following it would be "What are you going to do with the dog?" And I really don't know. We're still talking about it.

So now we know that Diana is allergic to something she's exposed to in our house 24 hours a day. Something that is leaving extra hair everywhere because it's shedding season. You know what that means, don't you?

Nothing.

That's right. In terms of her eczema, it means basically nothing.

Really, though, we knew that. We've traveled away from the house with variable effects on Diana's skin. We were between dogs for a while and her skin was still bad. It turns out, allergies and the causes for eczema can be entirely different. Here's a very stream-of-consciousness transcript of a talk by Dr. Harvey Leo of St. Joseph Medical Hospital on that topic. Eczema like Diana's is a combination of genetic susceptibility and environmental factors. Even if we got rid of our dog (and here are some interesting stories from dog-allergic families whose eczema didn't clear up after getting rid of dogs), Diana would still have eczema. She has an allergic response to the dog, an immune system response, that would probably manifest as itchy eyes, runny nose, etc. when she touches the dog or rubs her face in her fur: something we've already seen and know how to treat. But her dog allergy and her eczema are separate things. Also- surprise!- a study by researchers at the University of Cincinnati found that children with eczema may actually benefit from living with a dog! (Technical abstract here, summary news article here.)

We'll be meeting with the allergist again this week to talk about what her results mean. For the sake of thoroughness, we'll probably try having the dog stay elsewhere for a while. She's a nice dog, but I have too much on my plate to be really emotionally attached to her, so I would have no problem being a dog-free family. But unless it will positively affect Diana, I don't see a reason to get rid of the dog when there is only a correlation between Diana having eczema and our family owning a dog. The nurse at the allergy clinic suggested that the doctor might ask us to try another elimination diet (goody) with cow's milk and then egg whites to see if that affects Diana. Since our first elimination diet didn't reveal anything, I'm guessing we won't see much improvement in Diana's skin. I suppose in reality we'll probably just end up waiting this one out until Diana grows out of her eczema. There are so many factors I wonder if we'll ever find them all. I hate eczema.

(On that note, can I take a moment to vent that I am always the one taking the blame for Diana's eczema?? Of course it doesn't matter really, but I've had so many people ask about her skin, because that's the first thing strangers ALWAYS say to me, and then comment, "Well, you're so fair-skinned, it probably runs in your family..." FALSE! NO! Not me! I'm even mixed, for Pete's sake! You can take your disapproving stares to my tan-but-completely-Caucasian husband! Oh, genetics are a hilarious and nonsensical game.)

The results are in.... Part I

(But first, the backstory.)

It's been about two months since I last posted and it has been a crazy ride. A week or two before Easter, Diana's skin magically cleared up. No redness! No itching, even when she had the opportunity! It was a miracle! I'm always glad for these surprise improvements in her skin, but I know that it's just a cloud break- eventually coaches turn back into pumpkins and Diana's skin goes back to being itchy. Our prayers are still being answered- we are continually getting new insights into trouble factors and meeting people with new, helpful ideas about her skin. God is still faithful, even though she's not completely healed yet.

With the break in itchiness, we started really potty-training, which she took to like a dream. There was no reason to put ourselves through heartache when she was 18 months old. She just got it this time. Within a couple weeks she was almost completely potty trained at home. For the most part, she doesn't like diapers anymore and she can go through naps and public outings without any accidents! Hooray!

Sure enough, around Easter Diana started itching again. Our week or two of sunny weather became cloudy again. (You can count on clouds in western Oregon until about July.) And with the clouds came the redness and itchiness. We've developed an emergency protocol for Diana's skin. When it gets bad, she takes a shower every night (sitting in a bath gives the opportunity for scratching already damaged skin) and gets her face and hands wiped with a warm, wet rag every morning and when necessary during the day. We slather on Vaseline as if she's about to go open-water swimming and try to keep her covered in long sleeves and tights. Yes, we know what to do when the getting gets bad. But this time, it got REALLY bad. She couldn't stop scratching for anything. We tried to keep her covered up, but now there's the confounding factor of potty time: 5-15 minutes at a time of just sitting on the potty with her legs exposed usually scratching up a storm. If she can't get to her legs, she goes for her belly and back. If she can't get to that, she goes for her wrists and neck. If she can't get to those for some reason, she goes for her cheeks. This time, about 80% of her body was covered in little scabs from scratching until she bled EVERYWHERE. And because there were scabs, it hurt to put anything on her skin- even water. So Diana's bedtime routine became one of a child screaming bloody murder as we showered her and slathered oil (to moisturize) and then Vaseline (to lock in moisture) on her skin before putting on her PJs. It helps to think that you're just doing it for her own good and she doesn't know that you're actually doing the best thing for her skin, but with enough screaming, it becomes a jaw-clenching, soul-tiring routine. Suddenly our girl who loved water won't go near it, which is sad to me. She didn't sleep well at night, and every time she woke up she would scratch. We tried probiotics (though in retrospect, maybe not the right kinds) and apple cider vinegar or bleach baths to combat the yeast component, but it didn't seem to do any good for the rest of her skin.

It got so bad that I made an appointment to see our family doctor, who Diana had never seen. As "luck" would have it, she got a bad cold that was heading toward pneumonia again, so Joseph ended up taking Diana to Urgent Care where she met Dr. Sharp, who works in the same building. A few weeks later we were back to talk to him about her eczema. It was a wonderful visit. He listened to me! He listened to my story of Diana's eczema and ALL the things we'd tried! He had suggestions- new suggestions!- not just the same old bleach bath and moisturizing cream lecture. He explained eczema to me and referenced current medical literature (that I'd read!). It was wonderful. Unfortunately, his suggestion of sunflower oil and Cerave lotion didn't work for Diana's skin, but we switched her antihistamine to children's Zyrtec instead of a double dose of children's Claritin and it seemed to lessen her itchiness a bit.

He sent us to an allergist who didn't have any new ideas about what could be causing Diana's problems, but she ordered a blood panel, which meant my brave little girl had to unknowingly go to her first blood draw. Obviously I didn't really explain what was happening to her beforehand because I didn't want her to panic. She was so sad (what a terrible surprise!) but did very well and didn't try to move her arm around at all. Poor poor thing. I hoped it would be worth it to have an idea what she's ACTUALLY allergic to. We've had so many theories over the years and we need some concrete answers to work with.

[Fade to black.]
Surprise! Come back for the next post. This one is long enough.

Thank you!

I wanted to say a quick thank you to everyone who has been praying about Diana's skin! It is SO much better than it was a few weeks ago. It had really reached a new low at that point. It can be a little volatile still and it can fall apart within a day, but we're (still) learning new things to help cope, and it's generally better than it was.

Joseph and I have both noticed that Diana's itching is definitely stress-related, and sometimes it's just something she does out of habit. Normally when her skin is very bad, we don't ask her not to scratch because it just seems cruel and I've heard it's basically uncontrollable when eczema flares up. But since her skin is so much better, Joseph has found that he can ask her to put her hands together when he changes her diaper or puts moisturizer on her legs and she has no problem. This morning while changing her I noticed that it was easier than normal because she wasn't scratching at all! She just didn't need to. However, if she becomes distressed (can't find something, doesn't want to do something, I'm frustrated, she's in a loud/new place with people she doesn't know, etc.) her hands go straight for her back or neck and she starts scratching.

We've fit Diana's gluten sensitivity into our lifestyle and now it's pretty easy for me to keep her mostly away from any wheat. The next thing I need is to decide whether I'm going to really throw myself into kicking detergents out of our lives. It's a big step. There would be a lot of work involved in ridding our house of dust and detergent residues and converting all our products to detergent-free, then readjusting for the kids' skin sensitivities to different brands of products. Detergents and detergent-like substances are in EVERYTHING from household cleaners to pet flea medication to sunscreen and shampoo and soap and even fruit juice. I tend to think of Diana's eczema being related to genetics and sometimes I hope I'm just buying time before it magically goes away. That may happen, but Carrie pointed me toward this post which suggests that people with genetic eczema may be sensitive to detergents. It can't hurt to give it a try!

We (and I know some of you!) have been praying and asking God to heal Diana's skin and give us wisdom to know how to help her. I really feel like He's answered our prayers. Not only is Diana's skin improving, but we're finding out new information about eczema and suddenly coming up with new coping strategies to help her. The last time her eczema changed dramatically was when our friends the Fallons prayed over Diana as a little baby and asked God to heal her skin. Within a couple of weeks, her eczema disappeared from her cheeks and the insides of her elbows and lessened on the inside of her knees. Prayer is powerful, and God has been good to our little girl. We just need to keep praying for help and wisdom! It's entirely possible that her skin will start falling apart again, but it's incredibly reassuring to know that God is willing to help a little girl with itchy skin. Whenever I forget, I'm reminded that we serve a gracious, loving, living God. 

A mother by any other name

People say when you become a mother you need to also be a nurse, teacher, etc. I never expected I'd need to become:

• A voice actor- What, you thought children would be interested in a hungry caterpillar just because it's brightly colored? This is my dream job anyway, so it's kind of fun.
• A crisis negotiator- Because sooner or later, every child will get themselves (and/or a sibling) stuck without being able to get out.
• A thief- You only need to try taking the beloved blanket/stuffed animal ONCE to commit yourself to a life of crime. Anything to avoid the apocalyptic scene that comes from blatantly putting it in the laundry.
• A psychic/crime scene investigator- You're not always in the room when the offence occurs, but you learn to piece together the evidence and sniff out guilt. It's easier when only one of the suspects is really mobile. Or when the first thing they say as you walk in the room to the crying baby is: "Hi Mommy! I did NOT hit Liam with the toy!"
• A distiller.... of information- In order to explain the water cycle, the solar system, or atomic bonding to a toddler, you need a great deal of education AND excellent communication skills. 
• A student- Of cooking, of scheduling play dates and outings, of nutrition, of skin conditions, of all manner of bodily excretions, of effective discipline and policy-making, of toddler-appropriate art.... Thank goodness for the internet. I look up and study dozens of different subjects each day. I decided to start a family instead of go to grad school right after college, but I assure you I'm still learning just as much. 
• An expert- Diana's eczema has taught me that I'm the expert when it comes to my child. I hate going to doctors, but in all fairness, I usually schedule an appointment when I'm at the end of my rope and want them to tell me the magic answer to our problems, as if they just know everything about eczema. I'm the one who is around these kids 24 hours a day. I'm the expert. I need to start acting like it.
• A pack mule/ Super Woman- I will carry in the sippy cup, the baby in car seat, my purse, the diaper bag, the mail, and the groceries, and I will do it ALL IN ONE TRIP because I'm too lazy to go out to the car a dozen times. 
• Less of an introvert- "Hey, mom-I've-never-met-before at the park! Want to talk about everything and anything having to do with our children because we're the only adults each other will see until our husbands come home at the end of the day? Super!! We're Best Buds!" I don't think this would have happened if I was regularly socializing with people who didn't whine at me so much.
• A wildlife photographer- In the December 2012 issue of National Geographic magazine, Mel White writes that an ornithologist (Edwin Scholes) and biologist (Tim Laman) "logged a total of over 2,000 hours simply sitting in blinds, waiting and watching" to capture stunning images of birds of paradise in New Guinea. I hope those men have children, because such patience is exactly what's required to capture that 30 second video I posted on YouTube. The problem with recording the same subjects is that they grow up so fast. By the time you're able to capture the Latest Cute Thing, it may have already morphed into something else. And, as Amber of Parenting, Illustrated with Crappy Pictures, puts it so well: the presence of a video camera immediately eradicates any talent they were JUST demonstrating.
• An interpreter- "Eddo da!" = "Hello, daddy!"in nine-month-old speak. "Rara!" = "Hungry!" (I don't know why.) And if my toddler starts chirping at you a mile a minute in her voice that's three octaves higher than the average human can hear, it's probably because she's telling you something happy. Heaven help you if she has turned into a kitty. (Kitty voices are an extra octave higher than that.) It's really like being able to decipher the squeaks of dolphins. 

Diana's Eczema

Even itchy girls can be princesses!

Diana's skin is very definitely improving from last week. This is wonderful, but frustrating because we don't know what set her off in the first place or why her skin is mysteriously getting better. I'm still playing with the amount of wheat she can have, so we've probably let her have more wheat this week than she ought to, as I've noticed her nose is becoming stuffy again. Strangely, her skin still feels better and softer (more like healthy, normal skin), though it's still very itchy. It hardly makes sense since I thought wheat made her skin rougher. Again, her skin quality and itchiness seem completely disconnected. I fully expect her eczema to take a turn again before I figure out the reason why, but I'm trying to enjoy this time of better skin quality while it lasts! We'll be trying potty training again this week and I may ease off on wearing her tights under her pants, at least unless she starts scratching her ankles too much. 

Struggling

We are struggling with Diana's eczema in so many ways right now.

On the one hand, since making this eczema fight a priority, I feel like I know more about it, have a better idea of some root causes, and have some concrete ideas of how to overcome them. The Solve Eczema website and blog and related forum and the blog Sammy's Skin have been wonderful resources and great sources of encouragement. We know from our allergen diet that Diana has a sensitivity to wheat that affects her skin. I am interested in trying to make our house detergent-free and treat any yeast/bacterial infections Diana may have on her skin to see if that affects her eczema. That is my big experiment this year.

But there are just so many setbacks! I feel like every time we try to take a step in what might be the right direction, we just slide back a little further.

We ordered a trial pack of products from Cal-Ben Soap Company. I knew that there would be some risks in trying new products. Every time we try a new soap or lotion that doesn't work for us (and we have tried a LOT), Diana's skin breaks out for a week and takes another week to clear up.  Most recently, I tried Purex Free and Clear laundry detergent, assuming that all Free and Clears were the same, and both kids' skin broke out. From the trial pack, we mostly tried using Cal-Ben's laundry powder, bar soap and shampoo, since I figured those contacted her skin directly and I wanted to see if there was any big change from using them. The laundry powder may have been good for her skin, but it was hard to tell because at the same time, the bar soap made her break out in a rash that STILL hasn't completely gone away. In fact, it caused her to start scratching at her stomach, face, and arms which may have led to her eczema spreading to those areas. Oddly enough, it's also spread to her eyelids, so with her swollen, crusty eyelids she looks sometimes like she's been beaten. So, though it's hard to believe, her eczema now is actually worse than it was during her allergy diet when we were so desperate. It covers more of her body and her skin looks angrier and redder. She can't sleep well at night without oral antihistamines. Carrie pointed out that Cal-Ben isn't the best bar soap to use, so I'll take a look at the Solve Eczema blog's list of recommended bar soaps and pick another product. If we can find one that works, I'd still really love to see whether soaps instead of detergents will help us with this eczema. Additionally, I suspect the Arm & Hammer Free and Clear laundry detergent we were using before our Cal-Ben experiment (and that we're currently using, since I ran out of the Cal-Ben laundry powder) may have changed their formula somehow, because her skin is not "improving" to its former state.

I'm really starting to struggle with this emotionally. It sounds silly since I'm not the one suffering with constantly uncomfortable skin. But I want to protect Diana and I don't know how to protect her from herself! It is so difficult to watch her claw, rip, tear at her skin- this is not hyperbole!- until she bleeds, while crying because it hurts and she can't stop. I thought we were safe with full-length footie PJs, but she figured out how to pull an arm in to scratch her legs, back and stomach from the inside. If her fingernails grow out at all, they are bent backward from the force of her scratching. There's literally nothing that can distract her from her scratching trance. Diaper changes and bath times are ordeals. Potty training is basically nonexistent. And while it may seem trivial, it is a little annoying to see younger children master potty training when that's not something we can focus on yet. (Plus, I hate changing diapers.) I could call it anger or sadness or frustration because they're all true, but the word that might best describe what I feel is grief for my daughter. I grieve that she is in such pain- my poor, sweet girl who never did anything to deserve this!- and I can't fix it. It's hard to believe that it could have gotten worse, but somehow it has! And she has to live with it. I so much just want to make her better. I've told my husband that it's frustrating because I just feel so lost. It brings me to tears sometimes. I just want her to be healthy and I don't know how to get there.

I hope that when she grows up she won't remember much of this. Sometimes it looks and sounds like a war zone: blood on her sheets and clothes, Diana screaming at the top of her lungs while I try to restrain her long enough to moisturize her legs and put her clothes back on. I smile at her and try to talk to her about anything at all that might take her mind off her itching, but when it gets this bad I just want to cry with her. I will probably always think about these days, but I'd like it if she could forget. If she went through her life with mild, manageable eczema, needing to use a moisturizer for sensitive skin now and then, I'd consider that a success. Just as long as it's not like this all the time.

After all that ranting and gloom, there are some positive things happening.

Happy, handsome Liam!

-Liam's eczema was mostly on his cheeks and all over his back, with little patches on the insides of his elbows and on his lower legs. Not like Diana's, never that severe, but raised itchy red patches. After using the Cal-Ben bar soap on him during bath time for about a week, his eczema cleared up COMPLETELY. There is one spot about the size of a fingerprint on his back that hasn't gone away, but the rest of his eczema is just gone! Occasionally during the day something will make his face break out a little, but it's just so wonderful to have it mostly gone!
-We learned that wheat affects Diana's behavior as well as her skin. After our successes with Diana on a gluten-free diet, I wanted to establish the maximum amount of wheat she could have without it really affecting her skin or making her stuffy. It was a little tricky because the effects of the wheat appear to be cumulative with a 24 hour delay, but I started with some Goldfish crackers during the day or pasta at night. After a couple of days her stuffy nose started coming back (but she was also getting over a cold around then), but mostly I noticed the most appalling behavior issues! HATEFUL, ANGRY screaming at the top of her lungs at me multiple times a day over the littlest things, blatant defiance (or waiting until the last possible second) when I told her to do something, angry glares, screaming tantrums in public... Even at her worst, that's not my Diana at ALL. She's always been a sweet girl who would wither with one look or stern word from mommy. I cut out wheat again completely and you know what? We haven't had any of those problems since then. I think the safest thing is keeping her on a gluten free diet and just letting her have wheat in the most dire of circumstances- like if we're at someone's house or traveling and there's nothing else to be had.
-I realized I wasn't using the resource that is most useful in confusing situations like this: PRAYER. (Duh! How do I always forget that one?) I know that God can do anything, and it certainly doesn't hurt to ask if He could heal Diana. Also, James 1:5 says "If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you." So I have been trying to pray regularly for healing for Diana and also for the wisdom to know how to help her. Even if it's hard to get a clear idea of what I need to do, praying and being closer to God always makes me feel more peaceful. And while we're in the middle of trying to figure out how to fight this beast, that could only help!

Diana playing at the park.

The Upshot

We've already established that I'm terrible at keeping up with blogging, especially when real life beckons with  such a persistent "MommyMommyMOMMY!!!" We were able to stay on Diana's elemental diet for a little over a week. After the third day we added oatmeal back into her diet because we thought it was very unlikely she was allergic to oatmeal. After the fifth day we added wheat back in because no one in Joseph's family has an allergy to wheat, but we took out fruit and corn because after talking with Joseph's mom to get some ideas of family history, it sounded like there were some fruit and corn sensitivities when the kids were little. Every day I took detailed notes of what Diana ate and how itchy she seemed to be as well as taking pictures every morning and evening of her skin quality. At the end of our experimental diet, we assigned her itchiness and skin quality a numerical rating (1 through 5) and compared it with the presence of possible allergen groups in her diet each day. Then we graphed her itchiness and skin quality for each day. Not SUPER scientific since the numerical ranking was fairly subjective, but we tried to be at least a little scientific about the whole thing. Here are some things we learned:

• "They're unlikely to have environmental allergies at this age" = nonsense. As restrictive and difficult as this diet was, our observations were also largely inconclusive. Our graphs suggested that there might be a slight sensitivity to wheat (with a 24-hour delay in affecting her skin quality and itchiness), which surprised us since there isn't a family history of wheat sensitivities.
• Diana's itchiness and skin quality are almost completely unrelated. She was itchiest on some days when her skin was almost perfect, and the days she didn't scratch at all, her skin was at its worst. 
• Oral Allergy Syndrome (OAS) is a thing. When Joseph's mom told us some of the kids were allergic to fruit, I was floored. I admit I did not take that information gracefully. God makes pure, natural fruits out of sunshine and dewdrops, and my daughter can't HAVE ANY??? I did a lot of research into fruit allergies. Most of my non-anecdotal information came from the Mayo Clinic and the website of Dr. Adrian Morris of the Surrey Allergy Clinic in London. It seems that people who are allergic to certain kinds of fruits can  actually have a sensitivity to allergy-provoking pollens. For example, the major allergen in birch pollen has a similar structure to the major allergens in apple, hazelnut, carrot, cherry, pear, tomato, celery, potato and peach. Birch pollen can cross-react with the allergens in any of these fruits and vegetables and people with a birch pollen allergy can have a sensitivity to any or all of them. Symptoms of OAS include tingling of the mouth, tongue, and throat or a localized itching reaction on the face around the mouth. When I gave Diana a handful of sunflower seeds as a healthy snack one day, her cheeks flushed red and she started scratching around her mouth. Sunflower seeds fall under a possible ragweed pollen sensitivity, so she may have to watch out for that one day, and she may also be sensitive to anything else that cross-reacts with ragweed pollen (bananas, melons, tomatoes, honey, chamomile tea). Here are the major OAS food-pollen allergen groups:
• Birch pollen: apples, carrots, celery, hazelnuts, plum, wheat, fennel, walnut, peaches, pears, raw potatoes, parsnip, onion, buckwheat, honey, nectarine, cherry, peanut, tomato, spinach, kiwi
• Ragweed pollen: bananas, melons, tomatoes, honey, chamomile tea, sunflower seeds
• Mugwort pollen: apples, carrots, celery, melon, kiwi, peanuts, various spices, chamomile tea
• Grass pollen: melon, tomato, swiss chard, orange, wheat
• Latex (not a pollen, obviously, but still a sensitivity associated with food):

What we're doing now

It was a bit disappointing that there were no definite correlations between food allergies and Diana's skin, but it was at least relieving to be able to rule out some potential allergens that I'd been unsure about. She spent a whole week without dairy or eggs and her skin condition and itchiness went all over the place anyway, so it seems unlikely that she's allergic to those. 

Since she showed a possible slight sensitivity to wheat, we decided to try a gluten free (GF) diet for a week and see if that affected her at all. Interestingly, despite the fact that there's no family history of wheat sensitivity on either side, we started seeing changes in her skin after only a few days. I noticed that the raised, rough, red, almost calloused patches on the inside of her thighs and backs of her knees disappeared. Though it was still itchy (maybe itchier?), her skin felt softer- like normal, healthy skin. Since I'm the person who spends the most time with Diana, that was a big change to me, although it was more difficult anyone else to see. The biggest and most unexpected side effect was that Diana's nose cleared up. She has had an almost constant stuffy nose for more than a year, and she was always sneezing and having a hard time breathing if her mouth was otherwise occupied. After less than a week without wheat, her congestion just went away! That was definitely noticeable to more people. It feels like a small victory to have something to show for all our diet and allergy speculations. Diana has been GF for more than three weeks now! She's too young to understand about allergies, but it seems to work if I just tell her that she can't have whatever wheat-based food she's asking for and offer her rice crackers, fresh or dried fruit or cheese instead. Her sensitivity is fairly minor, so if we have lunch at someone's house and she eats some bread or pasta, it doesn't set us back too far. 

UNfortunately, Diana's skin is currently a wreck. Like with so many flare-ups in the past, I don't really know what could be causing it. We have been using Arm & Hammer Free and Clear Detergent in the laundry. We ran out a couple months back and I bought Purex Free and Clear, because I assumed all free and clear detergents were the same. [Sitcom laughter.] Both kids' skin broke out and after about a week I realized it was the detergent. We went back to A&H, but their skin didn't improve much. It's possible they may have changed their formula somehow. After about a week of having my heartstrings pulled by watching Diana cry and bend her nails backward ripping at her legs, I was feeling frustrated and lost and found the website solveeczema.org. I may have been a little weepy that week, but I did actually cry while reading it and the blog of a mom who fought her son's severe eczema with the plan from the Solve Eczema site. Their approaches- the background, the science, their hypotheses, and testing- just made sense. The bottom line is the difference between detergents and soaps. Go to the Solve Eczema site to read about it if you're interested. Normally I hate anecdotal cures relating to eczema, because everyone has an eczema story. "Oh yeah! My grandma/mom/son/grandson/self had eczema on their hands/face. It was so itchy, but they grew out of it/found a lotion that helped." That kind of story is COMPLETELY NOT HELPFUL. You just have to look at my children to know that their eczema is not like the mild eczema your child had on their hands when they were a baby. But moms who deal with moderate-severe eczema are troopers and scientists who are devoted to finding cures for their kids because they have to watch them suffer every minute of the day and night. These moms in particular make a good case for switching to soaps vs. detergents. We're trying to make the switch, but we're also working on finding the right soap products that won't irritate the kids' skin. It's another long process, but it seems like a worthwhile thing to try.

And that's where we are. Aside from her skin problems, Diana is an incredibly smart, growing girl. She loves running around and being with her family. She can count to ten (five, reliably, but ten when no one's looking) and is learning the alphabet and having fun with discovering puzzles and asking "why?" about almost everything. She loves reading Dr. Seuss books and sometimes surprises me by opening them up and reading them herself. (She has a good memory!) She is disarmingly sweet sometimes and stubborn other times. I guess that's a two year old!

Liam is 19 lbs with three teeth and beginning to get around. He's a tank of a little boy who loves his sister, the dog, his dad and his mom (almost in that order). He sits up, rolls across the floor and swims in circles on the hardwood to get where he wants to go. He's enjoying more solids and is happier as a result of getting more food. He's trying out lots of different sounds in his baby talk. He especially focuses on imitating Diana, and many times just seems content to let her do the talking. His interests especially include pulling hair and eating paper. 

Liam at eight months old and Diana smiling for the camera.