The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: May 25, 2017
Last Updated On: Jul 15, 2021
We have four children: Sabrina, Samantha, Angelina, and Jonathan. Sabrina and Samantha both have asthma. Somehow our son has escaped all illnesses so far.
Angelina first started showing signs of atopic dermatitis when she was a year and a half old. It began as just a small spot on the front of her ankle. We went to the doctor and were told it was a mild case of eczema. No problem, nothing to worry about. Just apply some ointment to the area two times a day and voila!
Countless doctors, creams and ointments later, the condition had spread to a majority of Angelina’s body and we were still trying to find help. Angelina’s hands and feet can get so bad that she can hardly stand, walk, write, or even hold a toy or fork. Many times the only thing we can do is put a clean sheet over the couch and let her lay naked on it because she is in so much pain. She has had countless infections and MRSA, and she missed a lot of school.
I have been to doctors who told me, “Just keep putting the ointment on her. She is overreacting when she tells you it burns.” Others just gave us a new cream and sent us on our merry way. “Check back with us in a few weeks,” they would say. I would be thinking, “I’ll do you one better and just call you tomorrow when she is crying in pain and this isn’t working.” We have total faith in the Lord that He is in control, but it is hard to explain that to a little girl. When she couldn’t sleep we just sang hymns to her and she would eventually relax enough to fall asleep.
Prior to the start of the school year, Angelina suddenly started showing signs of having a fast-acting infection. That summer she had already been through swine flu and pneumonia, which landed her in the hospital for five days. She never seemed to recover fully. From that point on, she developed full-blown asthma. A few weeks later, she got a super infection on her skin. We had never seen anything like it before; it looked as if her skin was being rapidly eaten away. Now, here we were with another infection. Her fingers were swollen, her body was covered with open bleeding patches and she could hardly walk. Our child who normally looked forward to school was begging us not to send her. She didn’t know how she would walk or write, and she was afraid of other kids seeing her.
With a doctor’s order, we were able to request a tutor from the school district who came to the house and kept Angi current with her schoolwork. This privilege is available to everyone who attends public schools who may need this option for a period of more than 4 weeks (with a maximum 18 weeks).
After about six weeks, Angi joined her classmates at school. The school year, however, was not a positive one for her. Although she was back in the classroom, her eczema was not gone. She still went through times where it was hard for her to write, walk, or just be comfortable without itching or pain. Sometimes she would feel so nervous when writing or taking a test that her hands would sweat and then the itching would start, which would only make her more nervous and continue the cycle.
As the year went on we watched our child go from a girl who was happy about school, to someone who didn’t want to go. She frequently cried about going to school and seemed depressed. She had so much anxiety over school she couldn’t fall asleep at night. In previous years, whenever we attended a teacher conference about her, it was always positive and she was known as a diligent, hard worker. Not so this year.
My husband is a public school principal. We are very fortunate because this gives us information and insight we might not otherwise have. Consequently, we learned about 504 plans. A 504 plan is a provision of the Federal Rehabilitation Act of 1973, which prohibits discrimination based upon disability. We are lucky to live in a country that has this. Students with disabilities are guaranteed a free and appropriate education. A 504 plan can be used to address physical, medical, or learning issues, and all schools and school administrators and teachers must comply.
In developing a 504 plan, you discuss and map out with the school all of the details regarding your child’s disability. You might talk about which activities your child needs to opt out of or what can be done to help your child accomplish a certain goal or task. All faculty involved with your child are then made aware of the plan. Every 504 plan is different because it is based on a particular individual’s needs.
We immediately decided to establish a 504 plan for Angelina before the start of the next school year. Angi was excited and kept asking when we were going to talk to the school about her eczema. So we called the principal, and she arranged a time for all of us to get together. (This is when parents play a huge role; their participation in a 504 plan is just as important as the school’s participation.)
When we arrived at the meeting, the principal, assistant principal, nurse, school psychologist, and our daughter’s new teacher were all present. We explained the full extent of our daughter’s condition as well as her limitations. We already knew some specific things that would need to be done for Angi, but we were surprised when the faculty actually came up with solutions and ideas that we hadn’t even thought of, such as having a laptop available for Angi to type on when she couldn’t hold a pencil. We were very impressed and appreciated the understanding and willingness of the school staff to work with us for our child’s sake. Once we worked out all of the details and wrote them down, we were given a copy of Angi’s 504 plan. The principal told us that we would revisit the plan at the start of the next school year to see if any changes were needed.
It has been a major benefit. Being able to sit down and discuss Angi’s needs and learn about available options and make plans with the school administration and faculty really helped everyone. We walked away knowing that we had done everything possible to help our child have a successful school year. Angi is in a classroom with a wonderful teacher. Her teacher is understanding and willing to work with changes and limitations. This understanding means everything to a child who is hurting and frustrated and is then able to walk into a classroom with a teacher who truly cares.
We’ve seen a complete turnaround. Angi loves her teacher and loves school again. She still has eczema but is confident going to school because she feels supported and cared for.