NOAH AOC

I may have to switch due to insurance carrier change, I want to make sure I take my son to someone with experience in Albinism/Nystagmus.

Any recommendations would be great even if I have to drive a bit. I'm sure I will try to see Dr. Hertle at some point in the next year as well.

Thanks!

-Jessie

Jessie,

Dr. Brooks at NIH is wonderful (and free as part of the National Eye Institute).

301-594-3141 (his Coordinator - Casie).

Also, we do drive to PA to see Dr. Richard Hertle.  Dr. Hertle is the best PO that we  have found thus far for Jathan (in my humble opinion).

Dr. Brooks sees a lot of kiddos with Albinism.  He works as a PO for genetic eye disorders.  Hope that helps.

Thanks a bunch! That just saved me some major time! I was looking on the map today for a central meeting place. I can't believe that we were so close to your house last Saturday when we went to Luray Caverns. We can drive anywhere... Not sure if Fredericksburg is closer to you than D.C.? We also passed through the town of Warrenton (66 to 29/211). I don't know where in these places would be good to meet but if you have any ideas let me know. We are very flexible as far as driving so we can even come all the way to Harrisonburg!

I will definitely check about seeing Dr. Brooks, I assume he is In D.C. for the NIH?

Thanks again!!

-Jessie

Hey!

The NIH and National Eye Institutes are located in Bethesday, MD.... Just a short distance from DC.

 We are flexible as well.  We can meet up in MD / DC or whatever works for you guys.  Yes, you were very close to me when you were at Luray Caverns.

Vickie

 we love Dr. Brooks!  He sees patients at NIH and Children's National Medical Center.  Dr. Brooks specializes in genetic conditions of hte eye and is amazingly konwledgable about the Albinotic eye.  Dr. Hertle is great when dealing with nystagmus and null points.  We left the DC area this summer and moved to Charlotte, NC.  However, we plan on continuing to see Dr. Brooks as their PO.  There is an excellent low vision specialist in the NoVA area as well. Are you on the DC NOAH yahoo group?  They are a wealth of information as well as getting together a few times a year for parties, events, etc.  

Hi, My name is Karen and i just joined Noah last night.  We live in central VA and my son was diagnosed with OA.  we would love to see a more specialized PO.  What do you mean "and free as part of the National Eye Institute"? 

HI Karen... I'm new to NOAH as well but WELCOME!! I just spoke to the coordinator Casey for Dr. Brooks yesterday and got an appointment with him for December 1st. They sound great there, it is all free because the National Eye Institute is part of the NIH (Natl institute of Health) which is completely federally funded. I know... it sounds too good to be true! On top of that, they have a hotel that they allow their patients to stay at for free right accross the street since they know many people have to travel to get there.

Everyone on here who sees Dr. Brooks seems to agree that he is wonderful and Casey was so nice to set everything up with!

Her number is 301-594-3141. I'm sure she would be happy to answer any questions you may have, it may take her a few days to call you back.

Good luck,

Jessie

P.S. Vicki (Jathan on here) lives in VA as well and since I live in MD we may try to meet up this weekend. If you were free maybe you could meet us as well. Her son goes to Dr. Brooks as well.

Cal's Mommy,

Where do you live at in Virginia?

NIH is completely free as part of the National Eye Insitute that is part of the National Institutes of Health.    They don't even take your insurance card or bill it.  It's completely government funded. 

Vickie

Cal's mommy....

Are you servieced by the Virginia Department for the Blind and Visually Impaired?  If not, please contact me off list and I can tell you whom to contact and where to get started.  They are most helpful with the purchasing of supplies for VI children.  They also perform FVE (Functional Vision Evals) to give you an ideal of what his functional vision is.

vickie

Oh, the children's inn is fabulous!!!! They are so nice there and there is a rather large play area for the children to play.  Also, they have a mail box for each room.  They put little toys in the mail boxes for each child in the family.  Very sweet!

Jessie,

i think i just realized i replied to the oca return email and not you.   so new to all this blogging/forum stuff.  sorry.  this is all great info and i am on a roll.  so many questions!!!!!!

Congrats on the birth of your son! 

Karen

Karen,

It was SO wonderful to meet  you and your cute kiddos this morning! 

vickie

You too!  I can't thank you enough for all the knowledge you shared.  i have to start my to do list for monday.  Tell Tonya thanks for a great meeting spot.  i can't wait to get cohen in a pair of jathan's cute little glasses.  :)