Questions for Neuro-Ophthalmologist

[tammylh]

I haven't been able to find much regarding what to ask an ophthalmologist, so here's what I came up with based on Jesse's metopic and his specific issues with tracking.

Can you check for intracranial pressure?
Can you check the optic nerve for any other issues?
What are the risks of damage due to the metopic craniosynostosis?
What are the risks to his eyes during and after surgery?
Are his eyes aligned? Are they working together?
Jesse seems to have hypotelorism and I’ve noticed looking at his photos that they appear to be moving closer together. Will surgery fix this?
Jesse’s pediatrician was concerned about his lack of tracking objects. I’ve seen him track objects without actively trying to get him to do it. It appears to me that it is more of an issue in getting his attention in order to get him to track an object. What are your thoughts on this?
How often should he be seen before and after surgery?
If anyone can think of anything else, please let me know. I have the appointment this afternoon.

[Carmen77]

Nothing to add, but good luck! :hugg

[tammylh]

Thanks Carmen! I'm a nervous wreck. I'm pretty quiet most of the time and usually the type that doesn't ask anything and just kind of goes with the flow. Gonna have to learn to go out of my comfort zone and speak up for my little guy. ;)

[AJ's Mommy]

Good luck sweetie!! Let us know how it goes!

[Monkey'sMommy]

That is an excellent list! Not really sure how relevant this is, but several of us here at ck have noticed that our metopic kids' eyes cross easily, especially their left eyes for some reason. I wonder if you've noticed that with Jesse?

[tammylh]

Thanks Shelby!

Kristin - I noticed it more right after he was born, but it seems to be getting better and better the older he gets. I know my DH is very concerned with Jesse's eyes because DH had to have 3 different eye surgeries when he was a baby due to some issues with the muscles. Not sure exactly what was going on, but crossed eyes was part of it.

[Monkey'sMommy]

Wow, three eye surgeries as a baby?!? His poor mom! That would be a great thing to mention to the ophthalmologist also.

[tammylh]

Yeah, she still cries when she talks about it and it was 40 some years ago. I'm not sure what was involved in all of them, but one of them they actually took out his eye and had to cut some muscle or something. She's a little sketchy on the details since it's been so long ago. I guess that would be a good thing to mention!

[tammylh]

Well, I got curious so I went off to Google. Sounds like DH probably had Amblyopia (lazy eye) & Strabismus (crossed eyes). Didn't realize that surgery could be needed for crossed eyes, but it sounds like that is what he had. I'll mention it at the appointment. Not sure if that can be genetic or not.

[Monkey'sMommy]

Don't know about it being genetic, but my dad had the same thing. He had eye surgery when he was three.

[Amanda3796]

We just made our a ppt...but it's not for some time. Our Cfs wants us to go once a year. I see Dr Ruiz before we go so I'll ask him more questions because I have no idea what to expect.

Thanks for posting.

[jjmc123]

The one thing I asked was how is his eyesight? I know Logan was only 4.5 months at the time, but the dr can give a rough idea. If they have an astigmatism, they should definitely be able to see that.

[BabyGabey]

That is an excellent list! Not really sure how relevant this is, but several of us here at ck have noticed that our metopic kids' eyes cross easily, especially their left eyes for some reason. I wonder if you've noticed that with Jesse?

That is so interesting because we noticed Gabe's left eye crossing before we noticed anything with his head shape. Didn't even think that about it being metopic related... just thought it was more because his dad gets a lazy eye when he gets tired.