Getting Started: A Parent's Checklist

Prepared by The Childhood Glaucoma Research Network (CGRN)

A parent leading the way

Facing the diagnosis of childhood glaucoma can be shocking and upsetting, and is filled with many unknowns. This checklist is organized to help parents:

• PREPARE to advocate for the health, vision, and learning needs of your child

• ADOPT constructive ways to face the challenges of raising a child with glaucoma

The good news is there are doctors and specialists that can help you understand glaucoma and its related issues. Sometimes it’s hard to know who can help, and what questions to ask, but there are resources on this website to help. The more information you have, the more capable you will be to make decisions that will have a long-­term positive impact.

Through the highs and lows, REMEMBER that in today’s world, with attentive treatment from an experienced doctor, many children with glaucoma do not lose significant sight and your child may function normally in every way.

STEP 1: Seek care from an ophthalmologist that specializes in treating glaucoma in children and follow-­up as directed by the physician.

This may be a pediatric ophthalmologist and/or a glaucoma specialist who will treat the glaucoma, and manage the condition and related issues (e.g., amblyopia) as your child grows. Your ophthalmologist should also perform tests to evaluate your child’s vision. One of the most common causes of vision decrease in children with glaucoma is amblyopia. You must be under the care of a doctor who can check vision  and manage treatment for amblyopia (lazy eye).

• Childhood glaucoma is a chronic condition, IT IS VITAL TO FOLLOW‐UP WITH YOUR CHILDHOOD GLAUCOMA DOCTOR(S) AS ADVISED.

• Ask  questions  if  you  don’t  understand  something.

• Don’t be afraid to change doctors or ask for a second opinion if you are unhappy with the care you are receiving.

If your child has low vision or vision problems (e.g. light sensitivity), you should ask for a referral to a pediatric low vision specialist (see vision impairment resources). If you have questions or concerns about insurance or financial issues, or if you need assistance with transportation to a distant specialty care center, you can ask for a referral to a social worker who can connect you with supportive services, if needed. Also refer to the website for articles related to “obstacles to care”.

If your child has co-­existing medical conditions, you will likely seek care from other specialists as well. Be sure to keep your child’s pediatrician involved, as they  are  the “quarterback” in making sure everything about your child is looked after.

STEP 2: Learn as much as you can about childhood glaucoma and related  issues.

Another excellent website about childhood glaucoma can be found at www.pgcfa.org. Be sure to sign up for their newsletter. To learn about Vision Impairment.

STEP 3: Keep good records of health care interventions, phone calls, etc. Good communication is vital. You are your child’s best advocate and no one understands their needs  better   than you. Keeping a binder/notebook that records the history and course over time of your child’s eye care is extremely valuable.

STEP 4: Seek constructive ways to cope with stress, and connect with others. Childhood glaucoma is a chronic condition that requires lifelong care, and can be overwhelming at times for parents/families. Over time, families learn to adopt effective strategies, and find that there are very good resources available to help with issues related to managing medications, surgery, vision problems, financial burdens, and family stress. With the right services and support, children with glaucoma, including those with significant vision loss, lead very successful lives.

One parent shared this advice, “Childhood glaucoma is not a race, it’s a marathon. Pace yourself – don’t look too far down the track. Focus on the now and not on the questions no one can answer. Celebrate the wins, no matter how small.”.

• Acknowledge your feelings of fear, anxiety, doubt, overwhelm, anger. Connect with  others who have a child with glaucoma. (pgcfa.org and glaucomafoundation.org)

• Rely on your support system of family and friends.

• Remember to make time for important family relationships, your marriage and your other siblings.

STEP 5:  If your child has vision impairment or a disability, learn the law and what services are available to help your child.

For preschool-aged children seek out Early Intervention, or an Individualized Education Plan for school-­aged children. Checking with your eye doctor, or a school social/case worker is the best way to learn more as service may vary in your area.

STEP 6: When your child reaches school age, partner with their school.

Be proactive in facilitating communication between your doctors, teachers, vision specialists (if any), and other care providers.

Help the teacher learn what glaucoma is, and any issues they need to be aware of. If   there are any vision challenges, help the teacher get to know ways to help yourchild use their vision effectively.

Trust your instincts, and speak up if you feel your child needs more help.