My Daughter's Nightmare: Failed Eczema Treatments, Painful Injections, and Cataracts

As mention on our previous post… We decided against pursuing Cyclosporin treatment due to concerns about potential side effects, especially given our daughter's delicate veins. Drawing blood from her is difficult, even for experienced phlebotomists specializing in babies. They often need ultrasound assistance to find veins in her hands and feet, which is uncommon. Despite enduring multiple needle pokes, they often can't collect enough blood for tests. We don't want to put her through repeated painful procedures with no guarantee of success. Protecting her comfort and well-being is our priority.

Desperately seeking a non-steroidal alternative, I learned about Dupixent® (Dupilumab), a biologic medication. We consulted a dermatologist and got referred to the National Skin Centre to be part of a trial group as Dupilumab wasn't officially available in Singapore at the time.

Determined to stop her severe eczema, we agreed to let her receive bi-weekly injections in August 2019, even though the treatment was very expensive (around SGD 3800/month or SGD 1900/injection) and not covered by insurance or claimable from Medisave.

My daughter said the Dupilumab injections were painful, but they were still less stressful than blood draws. At least with the injections, she knew the medicine was delivered successfully, unlike the frustrating attempts to find her veins.

The dermatologist initially advised that we would see results within three months. However, when we saw no improvement, we extended the treatment as instructed. We noticed that the injections only provided short-term relief. On top of that, we saw noticeable conjunctivitis (red eyes), a common Dupilumab side effect according to the doctor. Therefore, we ended the treatment in December 2019.

We weren't sure if Dupilumab or steroids caused our daughter's cataracts. Initially, she complained of excessive glare, leading us to believe her glasses needed an adjustment. To address the blurry vision, we visited an optical store and had her eyes examined. The optometrist used both machines and manual adjustments to check her prescription but found no significant changes in her prescription strength. Therefore, they recommended that we visit the National Eye Centre for a further check-up.

To our shock, the optometrist at the NEC discovered she had cataracts (clouding of the eye's lens) in both eyes – a condition typically seen in older adults. The optometrist believed steroids were the likely culprit, as the cataracts developed suddenly in the center of her eyes, rather than developing gradually from the sides, as is typical.

However, due to the long waiting list of several months and concerns that my daughter's blurry vision might lead to blindness, we sought a second opinion from a private optometrist.

The private optometrist confirmed the same, but also presented the possibility of correcting both the cataracts and her astigmatism with new lenses. While this route came at a higher cost, we ultimately opted for the private practice to address all her concerns and eliminate the need for glasses altogether.

In our next article, we'll share about our initial disbelief when discovering Topical Steroid Withdrawal (TSW). Terms like 'TSW', 'Red Sleeve Skin', and 'Elephant Wrinkles' were entirely new to us.

We hope that by sharing our story through this newsletter, we can help others understand this condition and find the support they need.