My husband left for a work trip at the beginning of last week. Comically, things inevitably fall apart when he leaves town, so I was mostly braced for the thrashings. And there were some, of course. Landon has been a clingy, needy baby like I haven't seen since the colic days of Adalyn, so that made for a fun week. I was right in the middle of cleaning our house of detergent, so there was tons of superwashing to be done and floors to be scrubbed with soap, etc.
We made some massive strides in improving Adalyn's eczema this week. I turned the air up and clothed them, mostly from head-to-toe, in eczema gear. Pants with attached "feet," onesies with built-in mittens, and Scratch Me Not mitten sleeves (which are a Godsend, as it turns out). We bathed multiple times a day, lathering them in aquaphor after baths and once again, covering them from head-to-toe. We bandaged up the open wounds and kissed lots of "ouchies."
On Wednesday, I began to notice that Landon's face was getting pretty intense looking. His face is usually scratched and scabbed up, but this was different.
I sent a picture to my friend, who said it could be impetigo, then my mom said the same, so I googled it and figured this must be what it was. So I called the doctor and asked for a prescription for antibiotics. We really dislike antibiotics because they totally wreck our kids' guts, but there is a definite time and place for them, and skin infection of this severity needs to be addressed.
I loaded the kids up and took them to Target to have the prescription filled Thursday morning. It was by far the worst trip I've had with the kids in regards to their eczema. As you can imagine, people reacted quite strongly to Landon's face. Most looked horrified. There were quite a few double-takes and the cashier literally just stared at him while checking us out. I could not get out of that place fast enough. My cheeks were flushed the whole time and I just wanted to shield my babies from the gawking. I wanted to hide them under a blanket.
I started the antibiotics and we went on our merry way, assuming everything would get patched up quickly.
I went back to the house scrubbing and the intense reading/researching and started jotting down new ideas to try. Having an infection that required antibiotics really drove home the point that we have got to get to the bottom of their eczema. We can't continue on like this. They are always at heightened risk of infection because their skin is cracked, raw and open 100% of the time.
All three of us were sick during the week, but again, it was more humorous than anything because as we've gotten so accustomed to, stuff just happens when Tim's away. I think I might have gotten three hours of sleep on one singular night last week. The rest of the week it was a broken 15 minutes here, 20 minutes there, shuffling between Landon and Adalyn's room as they cried out. I love my children, but I would really love it if they learned to sleep. Landon will be one in a few weeks and he wakes up every 1.5 hours consistently. It's insane. Although can you blame them? They are up clawing at their own flesh all night long, fighting that intense urge to scratch that is so common in eczema sufferers.
Friday night, as I was letting go of some tension and anxiety knowing that Tim would be home the following day, I ended up staying up way too late, reading site after site about eczema. I'm amazed by how many different potential "cures" there are, and sometimes I can get sucked in for hours making mental notes of what to keep trying.
And then I happened upon a picture of eczema herpeticum. In all my years of research, I can honestly say I've never stumbled across this term. But the moment I saw the picture of the "punched-out" blisters, my heart sank. I knew, without a shadow of a doubt, that this was what Landon actually had. And then I nearly had a heart attack when I read the next few lines, which went a little something like this:
So I googled some more. Article after article said the same: "dermatologic emergency," "fatal," "can be life-threatening," "severe skin infection that requires immediate medical attention," "The number of days between onset and diagnosis drastically affects the number of days in the hospital," "often misdiagnosed as impetigo," "requires antiviral medicine," "very rare," etc., etc., etc. What drove it all home was that it is caused by the herpes simplex virus infecting open eczema lesions. I'd had a cold sore the week before.
I felt the blood drain from my face. I had misdiagnosed Landon and just assumed he was totally fine now that he was on antibiotics, I was the one with the cold sore who kissed him and infected his eczema with my virus. It was 3:00 a.m. and I frantically emailed my doctor and called my husband, who was still out of town. Should I take him to the ER now? Wait til morning? What if he died between now and morning? Is that even a possibility?
The questions came and came...and came. We decided together to wait until morning. I could get a few hours of sleep, Landon seemed to be in decent spirits so probably wasn't knocking on death's door and I wouldn't have to wake the kids up. In the morning, Landon's face had gotten a little better but Adalyn had a blazing fever and was so pathetically sick. Of course. So I lugged the kiddos to Children's Mercy, where the doctor took one look and said, "Oh, that's eczema herpeticum. Has anyone in your house had a cold sore recently?" Punch. In. The. Gut.
She told us they may very well have to hospitalize him, and once again, my heart sank. She said she'd consult with the dermatologist and since he seemed to be in good spirits, she'd push to allow him to come home with us and do the medicine and skin treatment regimen at home. Ten nail-biting moments later, she came back and said I could take him home as long as I promised to come back if the sores spread, particularly anywhere near his eyes. I did, of course, and they sent us on our way with lots of instruction and four prescriptions.
And now, here we are, Sunday evening, with three very sick kiddos who need lots of cuddling and kisses. But a grateful heart, because it could have been so much worse. And I know that. The what-ifs are killing me. Why had I just happened upon this obscure mention of eczema herpeticum when I wasn't even looking up anything to do with skin infection? What would have happened if I hadn't? If I'd gone on assuming it was impetigo? It's too much for this mama's heart.
I believe I learned something I needed to learn this week. I've been so, well, whatever about skin infection. I've read time and time again how prone to serious skin infection kids with severe eczema are, but I guess after all this time and never having contracted one, I had become dangerously indifferent to the whole idea.
Now, my sweet little boy has a high likelihood of battling this skin infection for life. They said just like cold sores, once you have it once, you have it forever. The virus will stay dormant in his body, and every open sore is at an extreme risk of becoming eczema herpeticum. Every illness he has will put him at high risk of an outbreak. It's a lot to take, because my heart aches for my baby. But in the end, this will be a blessing in disguise, because to learn first hand that my baby could actually die because of his eczema is all I need to know to stop at nothing to solve this.
I've hit a fork in the road: go left, cross our fingers and hope they grow out of it, or go right, fight like mad and do whatever it takes to fix this for good.
What a friggin' week.
Because I should end on a positive note (and this is VERY positive), Adalyn's face now has NO eczema on it! Praise the Lord! NONE (this picture is two days old so there was still a tiny bit of eczema left). Her wrists and ankles have improved leaps and bounds this week. I am so very, very thankful!
I seriously cried when my Jada (yes, a dog) got bitten by another dog at a festival. I felt so guilty because I took her there and put her in danger and hadn't stopped the big mean bully. Poor girl needed antibiotics and pain meds. I can not even put together how scared you must have been. I wish we could just poof all these chemicals out of our homes. I hope your little ones are all feeling better.
ReplyDeleteI have a friend who has a son that has severe food allergies and it causes his face to look almost exactly like this. She is still nursing (not sure if you still are?) him and has had to cut out sooo much from her diet, and she's already a vegan. She does cranio sacral therapy with him among other things. I told her to come check out your blog, maybe she can help... Still praying!
ReplyDeleteHey I'm Hilary's friend and yes my son's face got one step away from yours ("Just" a staph infection was my personal mothering low)....I got to hear people tell me AAAAALL time to bring him to the ER. That was our social life....:/
ReplyDeleteBut we found some answers and in just one month, things are a million times better. I'd love to chat with you more about it....feel free to text (860-420-8268) or email justadrienne@gmail.com (put ezcema in the subject line)....if you text me I will send you before n after pics of my son....or friend me on FB, Adrienne Irwin. No docs had good answers for us, I've been through hell the last six months...so I feel for you and love to share what's working for us....(((hugs))) hang in there momma you are doing amazing.
My heart goes out to you and your beautiful children. I cannot begin to imagine how overwhelmed you feel.
ReplyDeletePer an earlier post from you, I do believe our children are our canaries in the mine. So many toxins in our environment - food, clothing, shelter, soil, air and water.
Have you researched any ways that you might help them gently detox their little bodies? Just a thought...
Patti
I suffer from severe eczema that often becomes infected w/staph as well. I also suffer from cold sores so it has been a nightmare. I'm allergic to EVERYTHING! I will tell you this...after many years of trying this, that and the other thing, there are some products that have next to nothing in them and are the only things I can use on my skin/doing cleaning.
ReplyDeleteVita Clean is the lotion/cream I use. ECOS (without lavender) is the laundry "detergent". I could only use the Vita Clean soap in the shower as well but have found that the Dove for sensitive skin that is hypoallergenic seems to be OK.
Also, Emu Oil has saved my skin. Literally..saved it. I did a small test patch area to test for allergens and, for me, it's working wonders. Coconut Oil works wonders too! I'm so allergic to everything...I'm even allergic to Aquaphor.
I wish you luck...and please don't blame yourself for anything. I know it's so hard and I feel for your kids because I've been living with this every day for years. The itching/pain is life consuming.
Dani
OH! and for cleaning...I use white vinegar/water (20/80 mix) and for harder, more stubborn stains I'll mix in a tablespoon of the green apple Dawn dish soap with it.
ReplyDeleteThanks so much, Dani! I'm so sorry to hear you suffer from this, too. :(
ReplyDeleteME TOO, SARAH!
ReplyDeleteHello Chelsea,
ReplyDeleteMy son has eczema since birth and his skin has gone through the same stages your children have unfortunately have delt with. I have too tried so many thing, I have gone to many doctors, fortunately there was one doctor who was able to help by providing the names of a daily lotion I can use to keep the eczema under control to almost normal skin, this by far has been thee best solution. My son's skin is normal if I use this daily lotion. Here is the names, don't pass this opportunity up.
Cetaphil daily lotion
Cortisone anti ich cream with Aloe
Apply after bathing, once a day or twice, Mix the same amount together onto clean palms and apply to babies skin everywhere except eyes.
I am sure this will work for you. :) give it two to three days and you will see.
Please Chelsea give it a try, I know we as mothers are skeptical especially with children with eczema. But I guarantee you that I was once in your place and thank The Lord I gave this solution a try.
ReplyDelete