I mostly manage ear care myself. I bought an actual otoscope for about $75 or so, and that thing is sooooo much better than the cheap penlight-with-a-head that I was using. Very worthwhile.
We don't go to the ENT very often because most of the time I can manage the ear care on my own.
My 4yo is speech delayed/apraxic. He had middle ear fluid problems at birth, and repeatedly failed the newborn hearing screening. By 2 months old, we had ear tubes. This fixed the drainage issues but I was unable to flush his ears so was dependent on the ENT to clean them out. By 20 months he was clearly behind. By 3 he was still not talking as well as his siblings did at 2. He had the tubes removed and is now in speech therapy twice a week. He is a few months past 4 now and we are starting to hear some improvement in his clarity.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"