Did you know October is Eczema Awareness month ? It’s hard. It’s the same month as Breast Cancer Awareness. Both are horrible awful issues affecting lots and lots of people.
Don’t get me wrong I totally think it’s important and I am not discounting the severity of the that disease in any way, BUT I do know eczema deserves more research and recognition. It deserves more awareness, more support for moms of children who suffer from eczema. It should be information at your finger tips about causes, treatments and the emotional gunk that comes from the balancing act that is eczema.
This post is a lot of rambling, but I know I am not the only eczema mom that felt alone in our battle. I know I am not the only one that felt like it was lotion after lotion, steroid after steroid, doctor visit after visit and like I am on a hamster wheel never getting off.
You aren’t alone…I am here
Ours is CLn bodywash.
You need some one to cry, vent or just talk to? Eczema mom understands.
And you know what it doesn’t make you a bad mom to not know the cure yet, be frustrated, not want to do the WHOLE bedtime skin routine or back the bag of all the extra stuff you need to get through the day.
Eczema may control your child’s skin and it probably feels like it controls your life…it sure did mine for a while, but just take a moment to share your story with me, facebook, twitter or the world and see how many other people will stand united and say “Eczema stinks!” We deserve a bigger voice and today it starts here!
We don’t need some Ribbon or tons of money to help find a cure. All it takes is a small village to change the world. Let’s support moms and their kids! And share what has helped calm the eczema monster in your life.
In honor of Eczema awareness month I asked a fellow eczema mom to share her story here!
Meet Ashley and family:
Ashley Vender is a former consumer packaged goods marketer turned freelance consultant. She is a mother (and Dr Mom) to two children and lives on the Northshore of Chicago. She advocates for eczema awareness and treatment, serves on her son’s preschool board and believes in healthy, active living. She is also a hockey mom, soccer mom, home cook and an eternal optimist.
“Why was I born this way?” The first time my daughter, 5, asked that question, she sputtered out the words between sobs. Her tiny shoulders were curled forward in defeat and her face was pure heartbreak. She was looking up at me from the bathtub, where she was soaking in bleach. It stung her skin, raw from yet another eczema flair. I wanted to cry—for her—too.
We’d just returned home from an emergency allergist appointment. The allergist had examined my daughter for signs of staph, and had once again told us to stay the course with the nightly (awful) regimen: a 10 minute soak in a bleach bath, followed by prescription steroids that also stung, followed by head-to-toe ointment. The morning regimen was more stinging steroids and ointment, and an oral allergy medicine to help with itching.
An emergency allergist appointment was nothing new for us, but this was the first appointment where my daughter was old enough to listen and process what was going on. She realized she wasn’t one of the lucky ones that outgrew eczema by age 5. She realized she wasn’t getting better, that the baths and creams she despised were not going away. She realized that she was different.
I’d realized my daughter was different when she was just days old. I remember asking the newborn photographer if she could retouch out the splotches on my daughter’s face. When friends and family came to meet her, I handed my daughter over with apologies for how rashy she looked. I asked about different creams and ointments and cleansers at every pediatrician appointment. We spent our first family vacation nervously keeping my daughter in the shade because the sun, sunscreen, and pool seemed to turn her even blotchier. By the time she was 11 months old, we’d been through a battery of allergy tests and tried our first (unsuccessful) elimination diet. But still, the red patches came.
We got on 3 month long wait lists with “the best” eczema specialists in the US. We spent small fortunes on “calming lotions” and kept leapfrogging to stronger levels of steroid creams. And still, the red patches came. Then the scratching started. So. Much. Scratching. My daughter stopped sleeping through the night during flare ups. She’d scratch until she bled in her sleep, then wake up in pain. We tried bleach baths for the first time, and adopted a bathing routine so complicated that either my husband or I had to be home from work every night in time for bathtime—no leaving something so important up to a nanny.
We planned family activities around our daughter’s skin. We traveled with our own soap, sheets, towels and enough creams and ointments to cover half the state of Illinois. We sent our daughter to preschool with special lotion and a list of restrictions, and still had an eczema flair so bad she missed a week of school and ended up on the Z-pack. We blew through our health insurance deductibles with rounds of testing and prescriptions that didn’t work. We saw multiple dermatologists, switched pediatricians three times and allergists three times, each time frustrated by the lack of options and ever decreasing quality of life for my daughter. Weeks were divided into “good skin days” and “bad skin days.” But all days were frustrating days. Because our daughter–no, our daughter’s skin–was different.
When my daughter asked that night in the bathtub why she “was born this way,” I had no good answer for why she had eczema, or for why it was so bad. My heartbreak matched hers. But what I did have was a promise. A promise to never stop looking for a solution, to never give up on her. I asked my whole universe (real friends, facebook friends, old coworkers, my entire family) to help me look for alternative treatments. To help me find a doctor that understood the link between eczema and quality of life. And…the universe answered.
My father-in-law (a physician himself) happened to play a round of golf with the inventor of CLn BodyWash. My FIL mentioned our daughter, and the inventor sent us a bottle of body wash to try. It was LIFE CHANGING. It gave my daughter all the therapeutic benefits of a bleach bath, but without the stinging or actual bleaching. Bathtime went from 30 minutes of tears, thrashing, spotted clothes and exhaustion to an easy, sweet childhood experience. And we’ve found that since she tolerates baths better, her skin needs fewer steroids. She is itching less (we think because bleach isn’t drying out her skin as much and that she is in water less) and therefore inflaming her eczema less. Our daughter is happy and she feels NORMAL–finally. We still have flare ups, but we deal with them better now. She attends a public school and has no restrictions. She plays ice hockey, goes to camp and is on a soccer team. And her skin does not hurt. I, as a mother, know I cannot make everything perfect for her always. But it feels pretty damn good to make her feel normal. Normal is enough for now.
So, we went back to the dermatologist and he said he hadn’t seen eczema that didn’t at least look like it had STARTED to heal, especially with the amount of medication she was on.
It made me sad to think her legs and feet could possibly look like they did forever. I WAS REALLY WORRIED WE WOULD HAVE TO AMPUTATE HER PINKY TOE.
Thankfully, he did have good news… she qualified for a medical study. We were to use a bodywash 3 times a week. The directions were very specific to get skin wet, lather on and leave for 1-3 minutes and then rinse.
I wasn’t sure at first what to think, but honestly we had no other options and nothing to lose! And NOTHING else had worked. Was she going to be stuck with skin like this forever?
12 weeks later I was more grateful than ever that we found CLn bodywash and that we were able to be in the study. We had no idea that a couple of bottles of bodywash would be so instrumental in our future.
Here is a video describing what she went through and how one simple product significantly changed our lives.
5 years later her skin is still clear and all the other issues she had have completely cleared up and NOT come back! And she’s just a happy 7 year old doing her thing!
You know I have read a lot about gut health and healing from the inside out, but our story is quite different.
Did you know she was seen for SEVERE reflux and had a gastro specialist because even at 18 months she wasn’t eating table foods and was aspirating her milk and baby foods?
Did you know she was seeing a pulminologist and struggled with breathing? We once moved her room upstairs and she wheezed so bad during her nap my husband had to take down her furniture and move her back to a room with wood floors? How about that she had a bronchoscope and we were told eventually she will have to have her throat stretched because she has a narrowing in her airways they think was cause by her being intubated at birth?
Well maybe not the catalyst, but the ball started rolling after her inpatient stay for staph on her leg. She was on a 30 day round of the most potent meds you can put in a 2 year old body and 5 topical steroids at once. She was diagnosed with a severe ear infection while on the meds. THAT SHOULD NOT HAPPEN!!!!
We started having her tested for auto-immune disease…23 vials of blood from a baby…that came back inconclusive. So here we were once again scratching our heads.
Finally, after this visit we were given the go ahead to see a pediatric dermatologist. We got in and found a plan. We did that plan which included oral steroids, topical steroids and about a 45 minute a night skin prep…
Our bed time was not even pleasant as this chart looks nothing like our night. Cross all that sweet routine out. And write go potty and prep skin…put topical meds in specific spots based on thickness, cover with aquaphor, put pjs on and put to bed. Nothing sweet, bath time fun didn’t exist. It was sheer exhaustion and worry creating our next steps. Just basic survival for what was our current situation.
Our night continued like this: Wake up in middle of night. Do ritual again and change Jammies as wounds wept on the ones she was wearing and then dried, stuck, reopening wounds.
After 2 weeks of the craziness we had a follow up with the dermatologist and he had a new option…
Options were GREAT. I was willing to try ANYTHING!
Part 2 coming tomorrow!
How many of you have children that notice things and point them out and it makes the hair on the back of your neck stand up from embarrassment?
One time, I was having my car serviced and 13 was 3. It was Christmas time and she had been watching an obnoxious amount of Elmo’s Happy Holidays. The employee who escorted me to my car said, “Happy Holidays!” My daughter smiled and yelled, “Merry Christmas, NO WAIT your black Happy Kwanza!”
What did I do? Turn red, questioned my parenting…
Hoppped in the car and put the pedal to the metal…stumbled and choke on my words. FINALLY, gathered my thoughts and began the teaching part. I talked to her about differences and that we don’t have to point out differences. EVEN WHEN WE NOTICE THEM!
We talked about the obvious like people in wheel chairs and that IF she has questions we can talk about it later. And she is always allowed to ask me when we are alone. I prodded with, “Did you know that people with glasses are different?”
I reminded her that she too is different. At the time she was an only child, and her body was different than Elmo, he has fur and is red. She doesn’t have fur and has light skin. Did I mention we PROMPTLY STOPPED watching “Happy Holiday with Elmo!” Just in case! Lol.
I tell you all this to share about this article well written by a loving mom that talks about her daughter (pictured below) and a skin condition she has. She shares the heartbreak and challenge it is when walking through the store. You can’t miss her daughter’s skin condition if you aren’t used to seeing it. However, just because her skin is different her feelings aren’t.
Also, if you know anyone with a skin condition feel free to tell them about our family. I would love to see if our favorite product can help them. And show them support they may not be getting elsewhere.
Have your children ever embarrassed you by saying or noticing something? Share your stories. What other life teachable moments come to mind?
Also, please take time to click on this picture and read her story.
So it’s back to school and today was Meet the Teacher. I created some cute little gifts for the teachers.
That was fun, but more pressing issues are at hand. My baby is going into kinder and I am like, “UH he was just born and yeah I am not ready for this! OH and he has food allergies and I am supposed to trust people I hardly know with him?!? He’s the baby and did I mention I think I just cured him of door licking? Oh and one last think I forgot to mention is he is the baby, my baby…baby of the FAM OH LEE”
What about my daughter with skin issues do I tell them that? How about the one who has a harder time adjusting?? Ok where is that bubble to keep them in or that homeschool teacher I forgot to hire… So I can control EVERYTHING?!?
But really…One of my guys really DOES have severe food allergies. I have taught him about his allergens. He knows not to eat anything I haven’t sent with him. The school only allows store bought snacks. And I took snacks for him to have when they celebrate birthdays in class. The teacher is someone I know and trust but still…this one could be serious and life threatening and I have pretty much been in control of him and his food for over 6 years!
Will his teacher teach the kids this info? Will the parents honor that? Do they understand the severity of it?
The pic above needs to be taught to kids who aren’t familiar. Parents please teach your kids if they have something my son can’t have don’t touch him, don’t offer him anything and please please please don’t tease him.
My boy is tough and doesn’t care, but some kid do. My youngest daughter suffered from severe, painful, ugly, yucky, oozy eczema.
This is a common issue with kids with food allergies. My son does not have skin issues and my daughter doesn’t exhibit any signs of food sensitivity, thankfully! BUT if you see a kid with red, painful, scaly skin know they are probably battling a couple different beasts. Give them a smile, encourage your child to be a good friend. And teach them to think about them and their differences.
You just can’t believe the kindness his friends extend to him. I have had many moms call me and say, “Hey my son wants to know what doesn’t have dye in it so he can serve it at his party!” The kids don’t want my son to feel different and they want him to be included. Those parents have amazing kids and I am greatful.
We do not want or expect people to do anything different for our kids, but it is kind to know they will!
If you know anyone who suffers from food sensitivity, life threatening, or not skin conditions or any other difference send them our way. We want to embrace those like us, cherish our differences and learn about others who are different than us.