Yesterday I was on my way to Jantzen Beach Oregon when my long waited for returned phone call came ringing in. It was Colins specialize Eye Dr. We've been playing phone tag all day long. It was great to finally connect as she's a very busy woman! We were able to briefly cover the findings with the red lenses, and discuss which direction to head next.
She says that it's around 90% likely this is what is going on. Achromatopsia. It's safe to say that he most likely and highly likely has it. Of course we're still going to be running future ERG's to ensure this is exactly what is going on, thus, he'll return for another ERG in another around 4 months time and 6 months after to determine but to also rule out the possibility of him additionally having Cone-Rod Dystrophy. Part of my question is if both of these can happen in conjunction together. She says not very likely but given he already has other problems going on it's not ruled out as a likely candidate in addition or in combination with Sticklers, Achromatopsia, and what else he has going on.
There is special tinted red prescription glasses that he'll be getting. We have to go to the actual Portland Casey Eye Institute location for them to specially create these for him. As promised from our eye dr, a lady followed up with me via the phone [It went to my voice mail, opps! However, it also didn't ring through..] leaving a rather helpful detailed message explaining the future steps in all this. She highlighted that going forward he'd have dark red for outdoors with light red for indoors. It all determines which glasses as to where he's at in his environment combined with how bright the lights or low the lighting is to him. To bad transitional lenses don't cater to this type of reds! I've already asked numerous local stores..so the answer on all that is no. The local stores don't have the accurate reds to cater to this type of things but they do have pretty much 2 shades max but it doesn't work with Achromatopsia.
The huge thing that is still unexplained is his depth perception problems. I completely forgot to discuss this with her over the phone. However, I plan on doing such in a little over a month when we see her next. Most of this they said would go away with glasses--but it hasn't..it's still there. It influence his ability to properly potty train as he freaks out of fear from falling off of the toilet, thinks dark lines in the stores are stairs so will crawl onto the ground backwards to go down them [Annoyance: The looks he gets for this is crazy, as he's getting older now to no longer be doing this any more.], or shadows are stairs. He'll even run into stop sign poles that are clearly in front of him. Something is going on with that. As he can see up to 10 feet away with glasses, and his vision has actually improved with glasses. Yet, they're still -9 in each one.
At this time it's safe to say he has Achromatopsia but they want to check into his vision further as time progresses. We have that base line in case Stickler Syndrome creates Retinal issues such as holes, rips, or potential detachment. Let's just hope it doesn't get to this point!
Thursday is his screening for Aspergers...I'm off to bed for now. Tomorrow is a new day.
No comments:
Post a Comment