Managing High Astigmatism in Children with Ectopic Lenses: A Guide

Ectopia lentis causing high astigmatism?

Hello, due to Marfan syndrome causing lens dislocation, my child developed high astigmatism at the age of three.
We were supposed to perform surgery to implant an artificial lens, but it was canceled due to postoperative care concerns and differing opinions with family.
Now, at 12 years old, my child has missed the critical treatment window.
The left eye has astigmatism of 700 diopters, and the right eye is no longer measurable, with only a vision of 0.2 remaining.
My child relies solely on the left eye and is worried that overuse may worsen the prescription.
We have consulted numerous ophthalmologists from National Taiwan University and Asia University in the north to Changhua Christian Hospital in the central region, and Chimei Medical Center and National Cheng Kung University in the south.
Most doctors have stated that surgery would not be very beneficial for my child, and there are issues with vision correction through glasses.
Each doctor seems unsure about how to prescribe lenses, and despite various tests, the astigmatism continues to accumulate, making it difficult for my child to see clearly.
We are also concerned that a strong prescription might cause headaches.

Yesterday, we visited the pediatric amblyopia clinic at National Cheng Kung University for a follow-up on the glasses issue.
The doctor was very patient but still could not provide a solution.
Since the last examination a few months ago, the lens has shifted upward, but this doctor had a different opinion.
He mentioned that lens correction is no longer effective for my child.
If we want to stabilize the prescription, he suggested considering surgery to implant an artificial lens, which could improve astigmatism but would not significantly enhance vision, potentially reaching only 0.4.
The doctor indicated that this surgery is more complex.
Is it because of the difficulty of the surgery and the limited benefits that most doctors say surgery would not help, hence not recommending it? The doctor also informed me that I need to find a specialist, but the only specialist at National Cheng Kung University is no longer available there.
He recommended that I check with Kaohsiung Medical University, Kaohsiung Chang Gung Memorial Hospital, or Kaohsiung Veterans General Hospital, as I might find a skilled specialist there.
I am looking for a specialist in this area and would like to hear professional advice, but I am unsure how to find one since each doctor has different expertise.
What type of specialist should I seek for astigmatism caused by lens issues? Do you have any recommended doctors? Additionally, do the astigmatism-correcting contact lenses from Bausch + Lomb help children? If we do get glasses, should they have UV protection lenses? Besides reducing light exposure, can they prevent worsening astigmatism? The eye issues have significantly impacted my child's learning and social relationships, and I hope to improve the situation, even slightly.
Thank you for your patience in reading this and for taking the time to respond.
Thank you.

Miss Ke, 20~29 year old female. Ask Date: 2015/11/24

Dr. Wang Zhishun reply Ophthalmology

Hello, due to the abnormality of the zonules in Marfan syndrome, there can be lens dislocation.
If a toric intraocular lens is implanted after surgery, there will still be issues with positioning and angulation, and toric intraocular lenses generally can only correct astigmatism up to 3 diopters.
If the child's cataract has not progressed to the point of requiring surgery, considering the use of rigid gas permeable contact lenses to correct astigmatism may be an option.
If the cataract has reached the surgical threshold, options may include implanting an intraocular lens, performing corneal astigmatism surgery, and using contact lenses (either rigid or soft).
Additionally, it is advisable to test the child's potential vision as a reference before surgery.
As for the physician, it is recommended to find a cornea specialist with expertise in cataracts.
Currently, eyeglasses have UV protection features that can reduce light damage, but they cannot prevent the worsening of astigmatism.

Reply Date: 2015/11/24

More Info

Managing high astigmatism in children, particularly those with ectopic lenses due to conditions like Marfan syndrome, presents unique challenges. Your situation is complex, and it’s understandable that you are seeking guidance on how to best support your child’s visual health.

Understanding High Astigmatism and Ectopic Lenses
Astigmatism occurs when the cornea or lens of the eye is irregularly shaped, leading to blurred or distorted vision. In children with ectopic lenses, such as those with Marfan syndrome, the lens may not be positioned correctly, which can exacerbate astigmatism. At the age of 12, with your child experiencing severe astigmatism (700 diopters in one eye and unmeasurable in the other), it is crucial to explore all available options for management.

Surgical Options
You mentioned that surgical intervention was initially considered but later canceled due to concerns about postoperative care and differing family opinions. It’s important to note that while surgery to implant an artificial lens can potentially improve visual acuity and reduce astigmatism, the outcomes can vary significantly based on the individual’s specific condition and the surgeon’s expertise. The fact that multiple specialists have indicated that surgery may not provide significant benefits suggests that the risks may outweigh the potential rewards in your child’s case.

Non-Surgical Management
Given the current situation, non-surgical management remains a viable option. Here are some strategies that may help:
1. Optical Correction: While it seems that traditional glasses have not provided satisfactory results, it may be worth exploring specialized lenses. Toric lenses, which are designed specifically to correct astigmatism, could be beneficial. Additionally, contact lenses, including those designed for astigmatism, may offer better visual acuity than glasses, especially for children who are active.

2. Specialized Clinics: Since you have been advised to seek out specialized care, look for pediatric ophthalmologists with expertise in managing complex refractive errors and conditions like Marfan syndrome. These specialists may have access to advanced diagnostic tools and treatment options that general practitioners may not offer.

3. Vision Therapy: Depending on your child’s specific visual needs, vision therapy may help improve visual function and comfort. This is particularly relevant if your child is experiencing visual strain or discomfort.

Additional Considerations
- UV Protection: It is advisable to use UV-blocking lenses, especially for children with high astigmatism and ectopic lenses. UV protection can help prevent further damage to the eyes and may reduce the risk of complications associated with prolonged sun exposure.

- Lifestyle Adjustments: Encourage your child to take regular breaks during activities that require intense focus, such as reading or using screens. The 20-20-20 rule (every 20 minutes, look at something 20 feet away for 20 seconds) can help reduce eye strain.

- Monitoring and Follow-Up: Regular follow-up appointments with an eye care professional are essential to monitor any changes in vision and to adjust prescriptions as needed.

Conclusion
Managing high astigmatism in children with ectopic lenses is a multifaceted process that requires careful consideration of both surgical and non-surgical options. While surgery may not be the best route for your child at this time, exploring specialized optical corrections, seeking out expert care, and implementing lifestyle adjustments can significantly impact your child’s visual health and overall quality of life. It’s crucial to maintain open communication with your child’s healthcare providers and advocate for the best possible care tailored to your child’s unique needs.

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