Mom of 7-year old, What comes next?
TL;DR: my daughter is 7 and autistic, we were diagnosed last year. We finally got in with a pediatric specialist this week, and I’m terrified about progression and future treatment options with her sensory issues, what comes next at her age?
My 7-year-old daughter was diagnosed with keratoconus last year, and honestly I feel like we’ve just been trying to hold things together with tears and prayers because we live in the middle of nowhere and there are no pediatric eye specialists here.
We’ve mostly been relying on a local optometrist, frequent prescription changes, prisms, and a lot of guesswork while trying to figure out what’s actually happening with her vision. We finally got in with a pediatric ophthalmologist/corneal specialist this week, and I’m trying to figure out what to expect and what questions I should be asking.
The hardest part is the functional decline we’re seeing between prescriptions. She LOVES reading. She reads above grade level and literacy has always been one of her favorite things. But every time she gets a new prescription, we slowly watch her vision deteriorate again over the next few months.
It starts with ghosting/double or triple images. Headaches. Squinting. Eye rubbing when her eyes are tired. Then her reading changes. She goes from comfortably reading chapter books with smaller font to needing larger and larger print. Eventually she starts choosing board books because the spacing and font are easier to see. She starts misreading words she normally knows easily. Her handwriting gets larger and less organized too.
And the heartbreaking part is that she’s beginning to notice it. Her little brother will ask her to read to him and sometimes she just looks so sad because the words are “too little” again, so she can’t always read the books he’s picked out.
She’s autistic, and eye appointments are already extremely difficult because of sensory issues and anxiety. We can barely manage eye drops. The idea of scleral lenses honestly terrifies me because I genuinely do not know if she will ever be able to tolerate them.
I’m trying very hard not to catastrophize in front of her. She thinks getting new glasses all the time is fun and exciting, and we’ve tried to preserve that joy for her. But privately I am terrified that she is going to lose functional vision before she ever really gets to just be a kid and live her life.
For parents or adults with keratoconus:
What should I expect from this specialist appointment?
Did anyone else have a child diagnosed this young?
Has anyone had success with autistic/sensory-sensitive kids and contacts or scleral lenses?
What do you wish someone had told you early on?
I think I just need some realistic hope and a better understanding of what comes next.