Ask the Experts: New Questions, and a New Approach

Susan LaVenture Long-time readers of the FamilyConnect blogs may be wondering what happened to the “Ask the Experts” blog. It hasn’t disappeared! We decided to merge Ask the Experts with the main FamilyConnect Blog, A Parent’s Voice, to make it easier for users to navigate.

We will still be featuring periodic “ask the experts” events, and you can find all of the past Ask the Experts posts by clicking on the link in the righthand navigation area.

In the meantime, we’re delighted to announce an opportunity to ask questions of the National Eye Health Education Program Low Vision Subcommittee, chaired by Mark Wilkinson, O.D. University of Iowa Carver College of Medicine, Department of Ophthalmology and Visual Sciences. The subcommittee has compiled a list of Common Questions Asked by Parents of Children Who Are Visually Impaired. In addition, we asked them to answer a few new questions raised by parents on our message boards, and by email.

If you don’t find your own question answered below, or in the FAQ, please leave a comment on this blog! And thank you very much to the doctors for joining us on FamilyConnect.

Ask the Doctors

Question: At what age can an eye care provider determine a child’s visual acuity, and/or determine if he or she is legally blind?

Answer: It is important to understand that no one has normal (20/20) vision at birth. Vision is a learned process. A child with normal sight is only able to see in the 20/400-20/1200 range at 1 month of age, improving to 20/20-20/50 around 30 months of age. Typically, a child with normal vision will reach visual maturity around 5-6 years of age.

For a child with a condition causing vision loss at birth, such as optic nerve hypoplasia (ONH), visual maturation will not be reached until around 8-9 years of age, or even older. With this in mind, it is difficult to impossible to know how well a young child is going to see as they mature. This is why it is important to not overly worry about the visual acuity number you may be told for your young child. This number is simply a point of reference.

It is important for parents of a child who is visually impaired to understand that if your child has a stable visual condition that has affected his or her vision early in life, most likely his or her measured vision will improved vision as he or she matures.

In the case of ONH, there is a large range of visual acuity and it is difficult to impossible to know for sure how well a child is going to see at 4 months of age. As the child matures, a better understanding of his or her visual abilities can be determined. If your child has a known visual condition that causes reduced vision, the child should be enrolled in early intervention services to help her reach them meet their developmental milestones.

Additionally, the child should have some contact with both a teacher of the visually impaired and an orientation and mobility specialists who will work with your child’s educational team to keep them on schedule for their developmental milestones. These professionals will also get the specialized vision services needed at the appropriate time.

Question: What is the status of stem cell treatment for conditions such as Stargardt disease?

Answer: Stem cell therapy holds much promise for many eye conditions caused by retinal photoreceptor (rods and cones) damage or degeneration. Interestingly, now, embryonic stem cells are no longer required for use in stem cell therapy. For the past couple of years, pluripotent stem cells have been made in the laboratory directly from an individuals own skin cells. From pluripotent stem cells, retinal photoreceptors can be grown. The next step in restoring vision with stem cells is occurring now by way of clinical trials where stem cells are implanted into blind or severely visually impaired eyes in an effort to restore vision. The next 5-10 years are going to be very exciting as more retinal degenerative conditions are treated with stem cell therapy.

Question: Is the gene therapy for Leber’s Congenital Amaurosis (LCA) designed to stop the disease progression or to restore vision?

Answer: The gene therapy currently in clinical trial for the RPE 65 form of LCA is designed to improve/restore vision.

Question: Is it common for teenagers with achromatopsia to experience headaches, tingling in his head, and pressure?

Answer: Teenagers who are visually impaired may experience headaches and eyestrain with sustained reading or other near vision tasks. This is because younger individuals with vision loss will adopt a closer working distance to use relative distance magnification to see more clearly. This closer working distance results in greater accommodative effort, which can lead to eyestrain and headaches. This is not unique to achromatopsia. It is common for teens and young adults who are visually impaired.

Have a question for the National Eye Health Education Program Low Vision Subcommittee? Please post it as a comment below!