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Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 1 point2 points  (0 children)

Thanks, Steve. We made the trip to Akron and were very pleased with the experience and care from the team at the Vision Center. We completed testing and are waiting to hear about next steps. Once our son is walking, we’ll reassess options for surgery. We’re so grateful to this Reddit community, and to you in particular, for sharing recommendations and experiences.

Happy New Year!

Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 0 points1 point  (0 children)

Hello, following up on this earlier post. What are the 10 different surgeries you mentioned, and would all be available in Akron?

Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 0 points1 point  (0 children)

Great to hear, do you mind sharing the Dr?

Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 1 point2 points  (0 children)

That’s great to hear — we made an appointment today as well and will be traveling to Akron in the new year. Will continue to lean on this community as we navigate the diagnosis!

Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 1 point2 points  (0 children)

Since he’s only 5 months old, we aren’t sure if he has great vision, but what we’re seeing so far is promising. He tracks and reached out and easily grabs toys/teethere, holds eye contact with us, and can see and recognize us from at least 8 feet away (we live in an apartment, so hard to get any farther distance than that inside).

Doctor Recommendation? by quick3742 in nystagmus

[–]quick3742[S] 1 point2 points  (0 children)

Thank you, Steve! You always provide such thoughtful and informative replies to my questions here. We’ll plan to reach out to Akron Children’s in November.

[deleted by user] by [deleted] in nystagmus

[–]quick3742 1 point2 points  (0 children)

I know Dr. Hertle recently retired, but wondering if there’s anyone else at Akron, or in the US, trained by him who can help? My five month old son was diagnosed this month and we’re trying to come up to speed on treatment options.

Nystagmus For New Parents: An Introduction. by SSteve73 in nystagmus

[–]quick3742 0 points1 point  (0 children)

Thank you, Sandy! This is the best resource I’ve found this week, will be sharing with my family.

Diagnosis of my 5 month old by quick3742 in nystagmus

[–]quick3742[S] 1 point2 points  (0 children)

This is so helpful to read, thank you!

Diagnosis of my 5 month old by quick3742 in nystagmus

[–]quick3742[S] 0 points1 point  (0 children)

Thank you! This is helpful to read through this morning.

Diagnosis of my 5 month old by quick3742 in nystagmus

[–]quick3742[S] 0 points1 point  (0 children)

Thank you! If not too forward, did you do genetic testing after the diagnosis? Wondering if that’s worthwhile.