I’ve had the chance to connect with so many sweet people through social media who either deal with ONH themselves or have a child or loved one who was diagnosed with it. Knowledge is power and I know I like to hear about others’ experiences – whether it relates to things they have heard from their doctors, patch time successes/failures with their kids, procedures and therapies that need to be done or how they manage their day-to-day – I truly find it uplifting and valuable information.
I know I have mentioned this previously, my daughter was diagnosed with a unilateral and an isolated case of ONH. By no means am I a medical professional, this post is strictly to share how we we’re advised and the diagnosis we received. I will also share some more details regarding the other specialists she was referred to and what was needed to be done in future posts.
In December, my daughter went in for eye surgery #2. Many people inquired about the surgery and I wanted to share a little more about the surgery she had.
Here’s a look back at surgery #1. She had it at nearly 2 years old. These pictures 🙁
What was the surgery for?
My daughter’s Ophthalmologist recommended doing this surgery – Strabismus surgery (i.e. eye alignment surgery or eye muscle surgery). Strabismus surgery is commonly done to correct alignment issues – in this case, my daughter’s affected eye was turning inward. This surgery does not improve eye sight or restore vision.
Can ONH be cured through any type of eye surgery?
The answer to this is no, not at this time at least. There is no way to repair the underdeveloped optic nerves. With technology in this day and age, I wouldn’t be surprised if there are future medical advancements that would help cure ONH. There are ways to assist the eye in restoring some vision back to the affected eye. Again, this is just me speaking to the unilateral case.
What efforts can be done to help “cure” ONH?
While the condition cannot be cured, we had two Ophthalmologists recommend patching as a form of treatment to help potentially gain vision. In terms of the length of patch time, that time varied GREATLY! The first doctor we saw – again you can read about that here – recommended patching for 30 minutes a day, whereas her current doctor (and our second opinion) recommended 6-8 hours in a perfect world, but we agreed on focusing on achieving 2-4 hours of patching daily!
We try to patch 3 hours daily – I will say, this is TOUGH. Kids just want to have fun, and though she is able to navigate around the house and play (which is so mind boggling to me) she needs me to be there playing with her. There is no independent play during this time. We try to keep it fun and do different things during “patch time”.
Why was surgery recommended?
The surgery was recommended to aid patching efforts (aligned bilateral vision) and also for cosmetic purposes. You can see in the pictures above that her affected eye has the tendency to turn in.
At the appointment prior to her surgery, I wanted the nurses to seriously check her vision capabilities during the eye exam portion. Normally, they cover my daughters glasses with a piece of tape and have her tell us what black and white symbols appear on the wall. My husband and I didn’t feel this effort was helping her or giving us a proper depiction of what she was truly seeing. She was always cheating turning this portion of the eye exam — turning to the side in order to see so she could give the right answers.
Anyway, long story short, we asked if we could use one of her patches during the eye exam and they truly discovered that her eye would look up if we were having her look at something straight on. This lead to her Dr. thinking we should do another round of alignment surgery to assist with her patching efforts so she wouldn’t have strained or double vision when she was not patching.
Ultimately, because she is still so young, her Doctor feels it is extremely important to capitalize on her patching efforts now as she is still at an age where she can regain vision to the affected eye by forcing her brain to send signals to those eye nerves when her unaffected eye is being patched.
Your daughter wears glasses, are those strictly for protection?
The answer to this is yes and no. It is extremely important to protect her unaffected eye in every way possible. This will mean safety goggles when playing sports, etc. Our daughter also is farsighted in her unaffected eye so she does have a slight prescription in that lens.
You can read all about our diagnosis experience here.
Hope this was helpful for you if you or your child has ONH or if you are looking for information out there on what to expect. Again, I love hearing what others’ doctors recommend, if there are any new treatments or suggestions you may have. Thank you for following along our journey as we discover new things and try our best to do our part for the sake of our daughter!
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