NOAH AOC

I called the mediaid office and ask to speak with a supervisor about " A Special medicaid" for my visually impaired son. The supervisor knew what I was talking about and gave me to an experienced person. I think since we already had insurance she took her time processing it. I submitted the papers in Nov and she called me in May for the Info again. He finally got it in June. His medicaid number has the numbers in it they show he is disabled. Gosh I hate saying that. BUT< I use those words to get him stuff only!!!

Good luck!

Jill:  He has to be "legally blind" to qualify, right?  So, when/how will I know if that's the case?

Andy has albinism, so he qualifies. The infants are considered legally blind from the docs. You can ask your PO for a letter...... We just gave the letters from Children's Hosp. In Phila and his local PO. Basically they just said he has albinism. Let me  go through my papers and if I can scan them I will email them to you if that is ok.....

Cam's mommy: Dr. Summer in MN used teller cards at the NOAH convention and says that it can be done around 3-4 mos of age.  It is not a definate visual accuity, but it can give you a ball park of what his visual accuity is at this age.  The important thing though, is that visual accuity for any child as young as ours is very poor and it develops dramatically until age 2 and continues to improve until about age 6 or 7.  In other words, there is no way that we can tell what the final outcome is.  I know that is the hardest part for me.  I want so much to know what is in Jathan's future... will he be able to see well enough to drive.. will he play sports... will he do ????  But it is just much too young for that.

A very nice lady named Roxanne (mom to Lexie and Matt) had the nystagmus surgery performed on her beautiful little girl and I am sure that if you search under her posts, you can find out about everything on it form her perspective.  Dr. Hertle said at the conference that he can start doing the surger around 9 mos to a year at the earliest (he likes for them to be on their feet).  Some insurances do cover it.  I know that mine does.  there is a book be eddie glacier that talks about nystagmus and planning the surgery for it.  You should check it out.  it's called navigating your nystagmus.  It's an awesome book. It is published by vidi press.  It's about $24 but well worth it.  I have an appointment with Dr. Hertle on Monday for Jathan and he is going to do the wavelenght testing on him to determine the degree of his nystagmus and null point.

Hope this helps,

Vickie Blankenship

nvblankenship@comcast.net

Hi there! It sounds as if things are going well for you. It does get easier as time goes by as you already seem to be figuring out. It didn't seem to take me long to be ok with it but as I had Michael at fifteen I have often wondered if I was just to young and naieve to know better! lol ! I just figured we would be ok and that it could have been a far worse condition to deal with. Now don't get me wrong... There were times I cried thinking it was all my fault ( being it was my genetics and all ) but we are all doing well now!

As for your questions... 

• At what age can we get an estimate of his visual acuity?      

 Michael started seeing a PO from birth. Our eye dr. was able to get a fairly decent estiment at a very young age using ( bare with me as it's been so many years) an electronic device that reminded me of something they use for ekgs. They stuck these sticky things on his temples and a couple of other places and it mesured how his eyes reacted to these different black and white bars on a tv. They estimated  his vision at 20/180 and when he got older we found it fluctuates between 20/200 and 20/400 but it was nice to have an idea, especialy at a young age.

• What have you heard about the surgery for nystagmus? I know it is early to be thinking about this, but I just want to prepare myself for everything. Is this something that insurance might cover? How much does it cost?                              

I can't answere your question about cost and insurance ( we have medicaid ) but I can tell you it isn't really too early... Michael had his Nystagmus surgery at 8 months old... So I would ask about it if I were you when you take him to see a PO. Don't know if I helped but if you have anymore questions feel free to contact me I can always get more detailed info from our PO ( my copies were all lost in the move ).....

nikkib0414@yahoo.com

www.myspace.com/darlingnikki0414

Courtney,

Hello I am glad to hear that you are doing better. Just me take it day by day. All you realy can do. I don't know if I told you before what Bethany looks like. She has sandy blonde hair and gray eyes her skin is fair but has a little pigment to her. They believe her to have OCA1B or OCA2. We are doing a gene test. So he may have the strawberry blonde hair and it may turn darker. Bethany was born with almost white hair and now it is sandy blonde. So give it time. Only time will tell what color his hair will be. Also about the nystagmus what on it. Bethany's eyes where going so fast back and forth I was really worried about it but now they have slowed down. The only time I notice it is when she is really tired or really trying to find something, and when she looking at a toy trying to figure out what it does. Her nystagmus really slowed down when she was about 7months old. How old is Cam? I really don't think we are going to do the surgery but that is something you and your family would have to see if it would help or not. Also other thing is that Bethany's nystagmus got more controled when she got her glass at 7months so that might even work for him. I am really happy you are looking into all of this stuff it will keep you ahead of the game. 

My insurance will not pay for our gene test we want do without earlier approvel so you might want to look into that. My doc write aletter stating the reason why we wanted the test. So I hope it goes through we will know in the next week or so. We also don't have insurance for vision so now we may be looking into the state to help us with that. I am not sure who you would conact about that but if you have a JOB AND FAMILY SERVICE they  might help. That is what Ohio calls their state help.

I am really glad all is getting better for you and it will. If you have any questions please email me and I will help you as much as I can even if you just want someone to talk to or vent, cry we are all here. Brittany has helped me through alot of my questions.  hope to hear from you soon

Dorothea 

Aw, thanks Dorothea!  I just want to try and be there as much as I can for new moms because I will never forget what the first year or so was like - all the questions and information overload.  I definitely don't know everything, but I can at least offer my support!

Brittany,

I agree with Dorothea!  I don't know what I would have done without you, Roxanne, Mashawna and Jill.  You guys helped me through so much and answered so many of my questions.  Thank you!

Awwww, Thanks Vickie!....

Our first few months were hell. And I like Brittany will never forget that. I also like talking to new parents as well. To let them know the shock is horrible, crying is normal and breaking down. Heck, i still do. But that is why I love this board so much. I have learned so much from other parents. And, it feels good to hear I am not the only one. Because boy it does feel that way sometimes!

I also love one the new parents help out the new new parents. It is wonderful!!! If that makes sense...

Nikki:  You said that Michael had the surgery at 8 months old...I believe I saw somewhere out here that he is 13 now...is that correct?  I heard from my PO that a lot of times the null point returns to where it originally was, the head tilt reverts, and that the surgery has to be repeated.  I take it that was not the case with your son?  He responded well to it?

Dorothea: Cameron will be 12 weeks old tomorrow...three months on the 17^th.

Too All You Ladies:  Thank you again SO MUCH for all the help.  I am trying to gather all the information you have given me into a nice concise list and then organize it so the next time we see a post out there like mine, I can put a little "check list" out there for the parents.  There is so much information out there, but it can be a bit overwhelming...don't know what to do first, where to look for specific questions, etc.  Maybe we could work together to create an "Emergency Response List".  What do you guys think?  I'll do all the work, but since I'm a newbie at this, it would be great if you all could look it over and let me know if I have things wrong and add things I might have missed. Thoughts?

One other thing...I think that the biggest help from you guys was hearing your stories and how well your children were doing...so my little "check list" is not intended to replace that AT ALL...just get all the information I have gotten about programs, treatments, websites all in one place.  What do you guys think?

I think it's a great idea!  Have you contacted Lori Aubrey at info@albinism.org yet?  If I'm not mistaken, NOAH now has Welcome kits for newly diagnosed families that include a book they unveiled at the recent conference in Vegas written by a bunch of parents about what to expect, etc.

Brittany:  Alright, I finally caved in and sent an email to Lori.  You guys have been so helpful; I guess I just wasn't sure I still needed to do that! :)  It would be great, though, if they have a "Welcome Kit".  I'm going to start working on my check list next week and I'll start a new thread once I have a rough draft put together.

Have a great night/weekend everyone!