A common myth we hear far too often is that you must have an MRI (Magnetic Resonance Imaging) of the brain in order to get the official diagnosis of ONH. That is incorrect. An MRI’s purpose in the case of ONH is to diagnose any possible brain abnormalities. ONH is officially diagnosed during/after a full comprehensive dilated eye examination. An Ophthalmologist will use a small ophthalmoscope (this is the handheld tool commonly found in most doctors’ offices that magnifies images and allows an examine of the back of the eye, the retina). An eye exam is crucial. There could be other findings on the retina, besides small optic nerves, that are signs of ONH. These include the appearance of retinal veins and arteries, and the size of the optic disk relative to the size of retinal vessels. ONH can also be diagnosed by fundus photography (these are photographs of the fundus, the backs of the eyes). This allows the doctor to accurately measure the size of the patient’s optic nerves. Fundus photographs can be difficult to capture in infants, which is why they often suggest doing this simple procedure under sedation.
ONH cannot be diagnosed by an MRI so why does my child need one? ONH is associated with other brain abnormalities, and knowing what the brain looks like can help anticipate other concerns or problems. If other concerns arise, a referral to plan for early interventions and treatment will be made available to patients through county services, birth to three.
Why is it so important to get the right diagnosis? If your child has ONH, there can be many other complications to look out for. We Recommend regular monitoring to check hormones from an endocrinologist. Annual checkups with an endo are suggested regardless of any immediate concerns due to the fluctuations in the body that occur naturally. Please ask for the following testing and information from an endocrinologist:
-Cortisol
-Diabetes insipidus
-Growth hormone
-Thyroid – free T3 T4
-IGF1
-Ask about ATCH testing
-What is a stress dose? Why does it happen?
-Plan for annual endo check ups
Children diagnosed with ONH can also be at risk for developmental delays and/or other neurological problems. We at ONH Awareness believe it is important to seek a second or third opinion if you feel your health concerns are not being adequately addressed by your current physician.
Thanks for reading!
Peace, Love and ONH Awareness,
Joanna
Cited from Optic Nerve Hypoplasia Research at Childrens Hospital Los Angeles -March 19, 2015.