How We Struggled to Save our Daughter: A Mother’s Story By Dawn Shover, Milan, Ohio
I am writing this message to all the families who have a child with severe eczema. I am the mother of four daughters ages 21 to 6 years old. Busy house! Our youngest daughter, Carlie, has severe eczema. When she was 2 years old her eczema was getting so bad she would not sleep at night. By age 4 her skin was literally scaling off of her. She would sleep from 8:30 to 10:30 p.m. and from 6:00 to 8:00 a.m. She would just begin to sleep and then she would be attacked by the nonstop itch demon. We would spend the night in the rocking chair, and in the morning I would brush up her skin flakes and wash her blood stained pajamas and blanket. Nobody really believed this was our family's life; it was hell for everyone. We had tried everything, yet nothing was working.
We took Carlie to a children’s hospital, major teaching hospitals, and many specialists. We tried chiropractic, homeopathic, natural path, and other alternative practices as well. Some of the advice I received from doctors would not work for our specific case. A few examples of there comments are:
- Put on head phones at night so you don’t hear her cry.”
- “She’ll outgrow it.”
- “Give up eggs, milk, nuts, ketchup.”
- “It’s okay that she won’t get herself wet.” (Carlie’s skin hurt so bad I could not even get her to wash her hands.)
- “Why do you give her Tylenol? She isn’t in any pain.”
When Carlie was 4 years old she would have days when she could not walk or get up to eat. She would lie on our floor or loveseat in a fetal position, saying “I just want to die.” She was dying right in front of us, and we could not find help. Her hands had such deep cracks in them she could not bend her fingers. They were almost purple with swelling.
Finally, with countless prayers and perseverance, we were led to two wonderful doctors five hours away and across the state line (which is another amazing story in itself!). The first doctor called us at home and said she had heard about Carlie through a friend, and would be happy to see her the next day. Wow! There was hope. My husband took off work and we left at 5 a.m. the next morning.
Upon seeing Carlie, the doctor knew that she had a severe staph infection that might have spread to her bones—hence Carlie’s crying at night. It felt like bugs were eating her bones. The amazing thing is we had just been to a children’s allergist at a reputable children’s hospital the week before, and we were told there was no sign of an infection!
Carlie’s skin looked like she had a severe sunburn. She was always cold and wore long sleeves and pants, even in the middle of summer. And she gave off an odd odor that no one but me ever seemed to worry about. (But this doctor smelled it too. I wasn’t crazy! And it turned out to be a symptom of the staph infection.)
Our daughter’s life and the lives of our family changed that day. We were given medication that allowed Carlie to sleep and cured the infection. Tests were taken and we were taught therapies that helped to heal Carlie’s skin. Through the one doctor we were introduced to another life-saving doctor who identified Carlie’s main allergy triggers, gave us additional treatments, and referred us to National Jewish Medical and Research Center in Denver for a two-week stay to fine-tune Carlie’s treatment.
Carlie is now 6 and loves life! We have eliminated her triggers as best we can and follow a high maintenance schedule to maintain her skin. She still has flare-ups, but we know how to deal with them before they deal with us! She is sleeping all night without any meds and going to school every day. She even took swimming lessons this summer and loves the pool—something she was previously unable to enjoy.
The biggest help for Carlie was, and still is, the use of wet pajamas under dry pajamas. When she was in her severe condition, she would take a morning bath followed by two hours of wet PJs, and then a night bath before sleeping in the wet PJs. At first, she would scream, kick and bite because the water hurt so bad. This is a struggle that we just had to overcome (daily prizes were a huge help!).
I now use the wet pajamas twice a week to maintain her skin, and she no longer has to sleep in them. Right now she takes a morning shower with her creams (I am now using Castor oil) and a night bath with her creams. Remember: Soak and Seal. It works!!
Carlie also does a nasal rinse each night. This helps rinse out any allergens from the day. If she has had major exposure (for example, a cat), we come home and do a nose rinse right away. This has helped her stay off all maintenance prescriptions. We have an excellent local allergist who is there for us when her flares get out of control. I do have to use steroids as needed on the hot spots when she flares and nose sprays when she has a cold.
Alternative methods have really come through for us. First thing in the morning, Carlie takes a natural Immune System Balancer. I give her oil of oregano gel caps twice a day, and when her skin starts to look bad I put liquid oil of oregano in her bath water. This has eliminated the pus bumps she would get on her skin. Oil of oregano is a natural antiseptic and helps fight infection. The best part about it is it does not kill the “good stuff” we need. When she is getting a cold, I give her garlic capsules. She is on a good multivitamin and takes a probiotic supplement. Carlie also takes flaxseed oil (though this stopped with the use of garlic) and sometimes aloe vera juice. I will add beta carotene, zinc and magnesium about once a week if I see it is needed, judging from her overall well-being. I use many other natural remedies and treatments as well.
Please be sure to do some research before starting natural supplements; they can be misused. For example, never give flaxseed and garlic at the same time as this may cause the blood to thin. There is so much information available! Just search and see what works for you.
Please do not give up hope! Keep searching. Eventually you will find help and what works for you and your child. Your family will soon have a life back!
Your child’s severe eczema will be a memory (a nightmare) from the PAST:
P Pray you will find help.
A Always ask questions.
S Stay strong.
T Tell others what you learn.
My thoughts and prayers are with each of you. I thank God every night that we were led to the doctors and treatments that saved Carlie’s life, as well as to the alternative forms of medicine. Please know (and don’t give up hope!) that someone is out there to help you as well. Have faith, and soon the severity of the condition will be a part of your past as it is ours.