Tips: Caregiver Tip Sheet (Shared by the Mom of 1 year old boy with childhood glaucoma)

The below is a set of useful tips that we have provided to our son's caregiver for the  treatment and management of his congenital glaucoma, including a daily check for  medications and changes to watch for in his eyes.

• Eye Color – as this was the first thing that we noticed when our son was diagnosed with  congenital glaucoma, so we ask to look out for variations in our son’s  eye color.

• Eye cloudiness – the easiest way we  can describe this is a change in the definition or  “less bits” in the iris.

• Bulging of the eye – look out for any increase in the eye size (this is obviously easier if the  pressure varies between the two eyes, or the glaucoma is more pronounced or only  occurring in one eye).

• Irritability or moodiness – although hard to use as the only indicator in a baby or toddler,  until our son can tell us when his eyes are giving him a headache, his mood is another  indicator that the pressure is up in one or both of his eyes. We have often realized that our  son’s pressure has been up for a number of days by taking note of the three indicators  above, and then note that he has been quite irritable and cranky until he has received an  oral dose of Dimox or pressure reduction eye drops such as Cosopt.

• Weeping eye(s) in direct sunlight. Daily Medications Checklist -­ we provide a daily eye drop checklist & any additional medications (Dimox if he is on an oral dose). This checklist ensures that it is clear with handover what medications and eye drops have been given, and prevents a double dose or missing a dose.

Other handy tips: If in doubt, call or take your child to the ophthalmologist. We have been very lucky to have an excellent ophthalmologist who has given us his mobile to call at any  time, however, if you do not have a direct number and it is outside of hours I would  recommend taking your child to your local emergency children’s hospital. A parent knows  their child better than any health care professional, and if you think the pressure is up in  your baby or child’s eyes then the sooner you can receive medical advice and pressure  reduction treatment the better both you and your child will be.

• Photos and video over time help – we received advice from a maternal health nurse early on in our son’s treatment, to take photos and videos of our son’s eyes to watch for changes in their size. Although we have not taken a photo every day, we take regular close up shots of his face to see variations in his eye size regularly. Although this is not a formal or accurate measure (the only accurate measure we know of is by the surgeon measuring his eye ball  size under anesthetic, or ultrasound testing), it helps us track whether his eyes are looking  bulgy or one is looking bigger than the other, or his sensitivity to light and his ability to focus on moving objects.

• Trust your assessment of your child’s eyes. When we initially sought medical advice for  our  son’s eye at our local pediatrician (prior to his diagnosis with CG) the Doctor could not see  the difference between his two eyes, however, my husband and I could see that they were  different and that one looked a little cloudy and bulgy, and as we were insistent that there  was something wrong, the pediatrician referred us to the emergency department at our  local Children's Hospital. As a parent, you look at your child’s face every day and notice small changes that someone else would not notice, and this helps as you continue to  manage your child’s glaucoma.

• Seek help from family and friends – looking after a child through surgeries and medical  treatment can be emotionally and physically draining (as I type this I am preparing for my son’s post trabeculectomy EUA tomorrow, and his 9th general anesthetic), so ask for help  from your friends and family if you can.