“During those difficult times, I woke up for Tahajjud because things started to feel too heavy; at that point, I knew I could only rely on Allah SWT to help ease the burden I was feeling. I would also read stories of the Prophet and his Companions. Understanding the Sirah of the Prophet reminded me of the importance of being patient after trying to manage her eczema.”
We all know that being parents, especially to small children, is a great responsibility.
If you have special children, whether they have physical or learning disabilities is even more challenging. Raising a child who has eczema, although it is not a disability, also has its unique challenges.
My Experience Parenting A Child With Eczema
My daughter developed severe eczema when she was about to turn 4. Before that, she only had dry skin, but it was manageable.
One day, there was a small area of irritation on her right hand. She started scratching that small patch – which then led to the spread of her eczema on her entire body.
The thing about living with eczema and caring for those who have it is that it’s not just the dry, itchy, inflamed skin that you have to manage; it’s also the fragile psychological state that you need to be aware of.
You might think a kid as young as 4 might not feel these intense emotions. Well, let me tell you something.
They experience these deep complex feelings just as adults do – but the challenge for them is that they are not able to regulate their emotions and can’t resist the itch. Oftentimes, they don’t know how to express how they feel and may end up throwing a tantrum because of it.
Parents require a lot of strength to raise a child who is going through so much pain because eczema affects them physically and mentally. According to the National Eczema Association, research suggests that children who suffer from atopic dermatitis have higher rates of depression and anxiety. Although not all children may experience depression but the struggle to manage eczema can impact not just their lives but the parents as well.
The Challenges
The never-ending itch
When our daughter first started to have her flare-ups, we weren’t sure how to handle it. I remember telling her to stop scratching although deep down inside, I know she could not resist. The itchiness is real and it’s a cyclical toxic battle people with eczema have to deal with. Eczema takes over your life and to a certain extent, it can consume you.
She would scratch around the clock – when she was eating, playing, and sleeping. She would scratch so hard in her sleep that it would wake us up. The sound of her scratching would often wake me up in the dead of the night – and that would trigger my worry about managing her eczema and prevent me from continuing to sleep.
A UK study suggests that children with eczema often experience disrupted sleep which would also affect parents’ sleeping patterns. On top of that, in the mornings we would often wake up with bloody sheets and dead flaky skin all over the bed forcing us to wash the sheets almost every single day.
Sometimes, she would burst into tears because she can’t stand the itch and the pain. As her mother, I would feel overwhelmed and helpless.
Her psychological state
People who suffer from eczema, adults and kids included, are often in a fragile psychological state.
She would often ask, “Why do I have eczema? How come dad doesn’t have it?” Once while she was scratching, she was also crying and said, “I hate my skin!” She was only 5 at the time.
I would always try my best to console her in different ways. I bought a book about a story of a girl who has eczema and read it to her at night.
I also made sure I spent more quality time with her. She liked being read to, so I’d read children’s books on the Prophet and his Companions. I’d remind her that Allah often tests people in different ways but that He would not put a burden more than one can bear.
Yes, she was young at the time but the values can be slowly nurtured in children. Apart from that, I also got her a lot of painting sets and legos to get her distracted.
But these distractions only lasted for a few hours. My husband and I always had to remind each other to be patient with her and with each other. Navigating the process to care for her was and still is a roller coaster of emotions.
Finding the cause
To efficiently manage her eczema, we counselled many doctors. The first doctor we went to detected the cause of the unstoppable itch: dust mites.
The third doctor was probably the most effective in terms of her medication and therapy – she taught us how to do wet wrap therapy effectively. She is also one of the few doctors that knows how to do the Aron compound – a compound of different moisturizers, steroids, and antibiotics that are mixed according to the patient’s weight and age. Although she was effective in managing the symptoms, she did not stress the importance of getting rid of the source of the dust mites.
We sought advice from a fourth doctor – a paediatrician but not a dermatologist. He highly encouraged us to get rid of our fabric sofa which was probably the main home of dust mites. Although we often steamed cleaned the sofa, he said it wasn’t enough.
After my husband got rid of the sofa and carpets, true enough, her skin improved tremendously. But there’s a catch. We still had to manage her eczema daily which was strictly based on certain routines that we had to stick to.
Managing Her Eczema Daily
Routine, routine, routine!
Every day we need to make sure that her skin is moisturized at least 3 times a day. She needs to use the same soap-free body wash and shampoo, as well as safe body moisturizers.
This is a routine that we always have to adhere to. Day in, day out, no matter where we are.
A dust-free environment
We also need to make sure that her surroundings are free from dust mites. A dusty environment is a no-no.
Every day, we vacuum the floors and the beds. Every other day when I am not too tired, I’d mop the floor.
Get the school involved
I also informed the kindergarten teachers about her eczema and thankfully, they empathize with her. They allow her to wear her normal clothes since the uniform makes my daughter uncomfortable. They also make sure she applies lotion every time she takes a shower at school.
Happier Days Ahead
After our relentless efforts to manage her eczema, her skin is much better. She is happy and thriving.
In the past two months, she was hospitalized twice due to a skin infection. It is difficult for a child to go through such pain at a young age but it can also be distressing for parents who care for kids with severe eczema.
During those 7 months that we battled with her severe eczema symptoms, it felt like it was years. The sleepless nights, shrilled cries, and mood swings can really take a toll.
Manage Eczema And Tawakkal
During those difficult times, I woke up for Tahajjud because things started to feel too heavy; at that point, I knew I could only rely on Allah SWT to help ease the burden I was feeling. I would also read stories of the Prophet and his Companions. Understanding the Sirah of the Prophet reminded me of the importance of being patient after trying to manage her eczema.
While my daughter was hospitalized for the second time in a month after Eid ul Fitr, I was really distressed. I was reminded of the words of Prof Muhammad Naquib al-Attas that experiencing adversities is a test of faith by Allah and should not be seen as a tragedy.
I instantly found comfort in those words and that eased my worries at the time. It reminded me that indeed, after every hardship there is ease.
For parents who are caring for children with eczema, I see you. You’re not alone in this and it will get better—although it may not seem like it.
Seek help when you need it. And have faith that things will get better because inshaAllah, they eventually will.
