The Itchies

I've always wanted to share our experience with eczema because I can't express how much reading other parent's trials with it helped me. I got some great treatment ideas and learning about other people's struggles always helps put things into perspective. We have lived back in Dallas/Fort Worth (DFW) for a little over a year now and I have to say the move was 100% worth it. We lived in Houston for almost three years and for about two and a half of those years, our life was consumed with Jacob's severe eczema. As an infant and before we moved to Houston he had small amounts of eczema on his flexors (behind the knees and elbows) and on his ankles. It was easily managed with the right creams, we rarely had to treat it. Then a fantastic job opportunity for my husband took us to Houston. Now, I don't want to make it all sound like more than it was.  His life was never threatened in any way, thank God.  However, every parent knows watching your child suffer in any way and feeling helpless is the worst. I did my best to recount our experience and edited out a lot of my whining (you're welcome!).

The Attack. Yes I know it's a bit dramatic to call it an attack, but that's how it felt. Jacob was two when we moved to Houston and within two weeks, I noticed it spread to a small area of his face.  The pediatrician said he was just adjusting to the new climate and we were told all the usual remedies (wraps, humidifier, moisturize after shower, creams not lotions, allergy prescriptions, no perfumes, etc). It slowly spread and while we noticed, he didn't seem too bothered by it. Fast forward about six months (July 2011) after we moved to Houston and it spread all over his body, inside and out. It attacked him, I can't think of a better way to say it. Poor little guy couldn't sleep. He was up crying, scratching and begging for relief several times a night. Many times all night. He also itched all day and there was no sleep during the daytime hours either. For over two years.  Having gone through the typical sleepless newborn nights and acid reflux challenges, you'd think we'd have been accustomed to all the missed sleep. Of course any kid lacking that much sleep is going to act out at some point and we certainly saw some of that, but he really was such a sweet little guy though all of it.  It's actually kind of amazing how well he took it all. Minus his skin, you really wouldn't have known what he was going through anything. Unfortunately I can't say the same for myself as I had permanent bags under my eyes and always had a slight brain daze going on. I can only imagine the long days Jason had at work on such little sleep.  Two of our biggest struggles during that time were getting a solid diagnosis and finding the cause.

We've never posted a picture of him on any social media when his skin was really flared up, simply because I don't post pictures of others I wouldn't want posted of myself. Especially of my babies! I'll make the exception here so you can get a better idea of what our little guy went through. Just to note, his skin was not this bad every day. Sometimes it would just be the allergy shiners around the eyes, or just the irritated skin around his mouth.

Allergy Shiners

This was his his first day of pre-k (3's)

We originally took this to show doctors because there's a lot of waxing/waning with eczema 

and you never know what it will look like come appointment time.

Diagnosis. We took him to so many doctors during this time, including allergists and dermatologists. Our pediatrician and pediatric allergist both said they had heard of eczema having such severe effects, but had never actually seen it.  He would itch so violently sometimes, it was very unsettling to witness. He would wake up crying, screaming and thrashing many nights. It often took Jason and I both to get him calmed down. It was later explained to me that eczema attacks from the inside out, so the poor guy was itchy on his insides also (which explained why he could never sit still). At his young age (2 - 4 yrs) he didn't have the ability to verbalize his pain, so he screamed, thrashed and clawed. You could actually hear his skin tearing though the baby monitor. I often noticed scratch marks on the skin of his neck that covers his esophagus, which I never understood because that seemed to be an area spared from the flare ups. The doctor explained that it was the inside of his throat he was trying to scratch. Itchy throats are a strong indicator to environmental allergies.

He sometimes would go to bed with his skin looking in relatively good shape, but still wake up five times that night and by morning he'd look like he fought a stray cat all night. Likewise, he'd go to bed with skin so flared it was painful to look at (like above), have the typical 3 - 5 wake ups during the night, and his skin would have dramatic improvement over night. There was absolutely no pattern to the flare ups or behavior of the eczema. It didn't matter what the weather or allergen count for the day was.  I tinkered with his diet so many times. I recount all this to say that I initially did not believe the simple diagnosis of eczema. Nobody I told (ranted) my story to had ever heard of such a thing. Neither had friends of friends. While the medical professionals were all very consistent in their eczema/allergy diagnosis, even they seemed a little stumped as to why none of the drugs or creams seemed to help. I was constantly googling, searching Web MD, blogs and creeping on chat sites for answers. I once read about a parasite found in sand and I was convinced I had found the answer for about 48 hours. I cried in doctor's offices.  We easily spent over $1,000 in different creams. I bought local honey. I paid a ridiculous amount of money for special eczema pajamas. I washed him with soap from Africa.  I even asked for reflux medications to give him at one point, just in case that was there somewhere. I was a mess. For over two years. 

One night I found a support site for parents with children that had severe eczema. It was both comforting and disturbing. Comforting because people described the exact same symptoms Jacob had. The not sleeping. The violent itching, even when his skin looked good. I started to come around to thinking maybe it was just eczema, not some horrible mystery disease. The disturbing part was many of these parents hadn't slept in YEARS.  Not long after that my husband used a work contact to get us an appointment with a world renowned pediatric dermatologist. The average wait was months long, but we got an appointment in two weeks. She took two minutes to examine Jacob and said "it's eczema." At that point we were officially believers.

The Cause.  If you happen to have talked to me during this time, I'm sure I owe you an apology because you likely heard me ramble on (and on and on) about what could have been causing his allergic reaction resulting in the eczema. I thought about it day and night. And overnight during the wake ups. I was seriously obsessed, just ask my husband.  Oh yes, I was a pure joy to be around!  We had done all the standard blood and skin tests which indicated his environmental allergies were very high.  We had the vents in our house cleaned, tested and installed black lights. We threw out all stuffed animals.  Bought an air purifier. Got hardwood floors (okay, that was more for me). We knew the cause was something in the air, but weren't sure exactly what. There was a good four months where the poor guy simply didn't sleep at all (July thru early Dec 2011). Not a single night of sleep or nap during the day. After the four month period, which also coincided with the start of winter, the wake-ups decreased to 3 - 5 times a night for about 3 - 5 nights a week. My husband and I were able to collect some of our sanity and develop a plan.

We had suspected the climate in Houston was the cause since there were no issues when we lived in DFW, but had no way of knowing for sure. One of the allergists we saw, let's call him Saint Perez, suggested we take Jacob back to DFW for a two week time period and we would know the answer pretty quick. With Jacob still being in preschool and my amazing in-laws opening up their house to us, it was all very easy. We saw an improvement in his skin's condition within 24 hours. The redness and swelling noticeably lessened. By the end of the two weeks he had cleared up more than 95% and he was SLEEPING. I remember feeling so absolutely relieved and just staring at his clear, beautiful skin. I will never forget the joy Jason and I felt to know we had found "the cure".  I didn't want to go back to Houston! After reporting back the positive results to Saint Perez, he recommended we take Jacob back to DFW during a few different seasons just to be sure. We took him Winter, Spring, low summer and high summer. Each visit had the same effect ...... sweet, beautiful relief! We ultimately determined mold was the main irritant causing him so many issues.

Home. It took a little over a year after our finding until we could move back here. The move came just in time as his skin started getting infections, which didn't go over well with Jacob because they required treatment. Also, the strong antihistamines and lack of sleep were taking their toll on him (and us) behaviorally and we didn't feel like it was fair to him to start kindergarten in those conditions.  A lot of prayers got answered and we were able to move the summer before kindergarten! I still feel so incredibly blessed to have a husband that left a job that he loved for our family (and put up with my temporary insanity).  He has worked very hard in his career and it was a big risk for him.  Most of this post is about my perspective, but none of this was easy on him either and I'll always be grateful for the support and sacrifice he provided. While I'm at it, I should also point out that my husband never once complained about the messy house, pizza dinners or my frumpy new look. And believe me, it wasn't a good look.  Let's not forget our Addie Jude who was just a baby then and oh my goodness, what a good baby she was. She definitely got the short end of the stick during that time, but she thrived nonetheless.

I'm happy to report that nearly a year after the move, our quality of life has improved immeasurably. Oh what consistent sleep can do for your mental and physical state. Jacob has even acknowledged the absence of his "itchies" since we moved and he's a lot less wiggly!  This last December was our first Christmas card picture since before we lived in Houston that didn't require professional photo retouching on Jacob's face. I remember one year while waiting in line to get our Christmas photos taken Jacob scratched so much that he drew blood on his face and all over his white collared shirt. I had to leave the photo shoot and reschedule. Summer's were toughest there because it felt cruel to have him outside in the heat and humidity or even in a swimming pool (chlorine).  We have come so far, now we are outside swimming most days of the week! He still has eczema, of course, but it's very slight.

I feel so lucky that Jacob's issues were fixed by a simple move five hours away.  It breaks my heart to think of the families whose fixes aren't as easily attained, or worse, don't exist.  I know Jacob's case pales in comparison to many kids and I think of those families often. I've heard people say that God's doing the most work on you when he feels the farthest away.  I definitely felt him working on me. One lesson God seems determined to make sure I REALLY get in life is this: You just never know what someone is going through. But, that's a whole other post!

A more recent picture, look at that beautiful face!