Hi, I'm new to this site!!

[bansheegirl]

Hello Everyone,

I am new to the site and wanted to introduce myself and little bit of my situation. I am a mother of 3 wonderful children and I have an absolutely wonderful and supportive husband.
Our daughter, Audrey, was born about 6 months ago and has anophthalmia. We were devastated. She also has 4 congenital heart defects. She is due to have surgery at Stanford for this in October. We new about the heart defects but had no idea she was going to be born without eyes.
It has been a real roller coaster ride. We go to Oakland it seems like all of the time to get Audrey fitted for her conformers. It is so horrifying to watch and she screams in terror and pain combined. My husband has to hold her down, while the ocularist's wife hold's her head. I'm wondering if it will get any easier. I do not know how anyone can explain to her what is going on because she can not see anything.
I am very thankful for the fact that her eye sockets are growing at an amazing rate. I'm hoping she can be fitted for the actual painted prosthetic soon.
She is just starting to open her left eye now. Her right eye is still shut most of the time, but opens once in a while. She has a cyst on the right eye. We think this is making it harder for her to open her eye lid.
So, that is a little about me and if you have any suggestions or ideas on how to make this process easier for her, I would love to hear about it.
She is such a wonderful happy baby. She knows when she is in the ocularist's office because she holds onto us for dear life. We would just like to make it easier for her.
OH...one more thing. When the doc goes in to get the conformer out he uses this tool that looks like a dental tool with a round little end. He puts this in to get the conformer out, but says he loses it....Is there another tool out there that anyone has seen before? Just wondering!!
Thanks for reading my thoughts!!

Heather

[JessicaHolt]

Hello,
Who is your occularist? I also live in California, just north of Sacramento. Our occularist is Phil Danz, his brother has a practice in San Francisco. We are very satisfied with Phil. Our daughter, Jadyn 3 months, has micro in her left eye and received her painted eye 3 weeks ago, we just went in today to have the periphery and the bulk added to.

If you have any other questions you can email me at JessicaLBell@sbcglobal.net

I hope all goes well for you.

[aprilk24]

OUr son Mason was born with bilat micro and has been getting conformers since he was 8 months. He kicked and screamed and we were holding him down as well. It was emotionally painful. We almost gave up on the whole idea. THe occularist was excellent and placed the conformers at my sons pace. When he fought, the occularist waited. We distracted him as much as possible and just kept putting them in. In time, he has been much better and hasn't cried at all! He is 16 months and is on his 3rd set. He gets frequent eye infections so he has also gotten used to us poking at his eyes on a daily basis. I guess what I'm saying is keep trying and don't give up:). I tried to tell myself that it was for his own good. As far as tools, we've always used little plastic plungers. DIfferent sizes depending on the conformer and the amount of suction we needed. Hang in there.

[bansheegirl]

Jessica,

Our ocularists name is Steven Young. He is in the Oakland area and Kaiser insurance says he is the one they will send us too. He also is the only one in the area through Kaiser that knows how to deal with children supposedly.
We are keeping our hopes up that things get better.
He just seems like he is in such a hurry all the time. He yells at his secretary/wife every time we go and hurries it along instead of being patient. I don't know. I guess we will just hang in there and hope things get better!!

[bansheegirl]

I promise we will not give up. Our ocularist is not as patient as yours. Does your ocularist use a tool that looks like what a dentist uses except the end is rounded. Ours uses this when he goes to pull the old conformer out. I'm just wondering because it is almost like the old conformer is constantly slipping off of this tool. He is jabbing this tool in her eye all the time. It looks like it goes in there so far. She just cries and cries. We do try to distract her, but most of the time it is no good. He did tell us it would get better as she gets older. We want so much to have the regular prosthetics put into her eye socket, but do not have any idea when this will be. The doc said when this happens the appts. will be 3 days long.
Does anyone know of it taking that long? It seems like a long time to me, but Im not a doctor!
Heather

[aprilk24]

Heather:
I don't believe that I've seen the dentist-type tool you described. The opthamologist used the same plunger tool as the occularist. If you would like to talk to our occularist, he would answer questions as many times as you asked. I found him on the internet after a bad experience with another occularist. He called me the next day after I sent him an email and answered a ton of questions. His name is Tim Barrett and he works for Midwest Eye Labs. You could shoot him an email. I say if you're not happy with yours, keep looking until you're comfortable. I'm glad we did. April

[bansheegirl]

April,
We live in California. Where is Midwest Eye Labs and would this gentleman be willing to just talk to us on the phone? Unfortunately, our insurance is an HMO and there are only 2 ocularists that will accept our insurance. These are the only people Kaiser will send us to. Maybe Dr. Barrett would answer questions through email. This way he could do it when he is not busy and we will not take up any of his time over the phone?
Thanks for the info and if you think he would answer questions over email could you please give me his email address?
Heather

[JessicaHolt]

Hi April,

I believe Phil Danz takes Kaiser, they have a sign about Kaiser in their office. I know Sacramento is a couple hour drive for you, but it might be worth quality care. Their phone number is 916-485-4249. We drive a little over an hour since we do not live in Sacramento, but he is well worth it. My baby barely cries when we are there because his associate, Eric, is so fast. He uses the plunger to take the shell and the conformers out. They started to see my daughter, Jadyn when she was only 4-6 weeks old. She is now 4 months, we have already been through all the conformers and she has received her first painted shell and they have added to it already. We have an appointment on wednesday 8/22. I can ask them any questions if you would like. There was one time they used a different tool and that was because they took an impression of her eye and we didn't know there was a void above her eye and some impression material was stuck. They just kind of scooped it out.

The time they took the impression was the worst for me. She cried and cried. They put the conformer back in and she was fine. At the next appointment they placed the unpainted shell to see how the fit was (and it was excellent). They did a color match of her other eye and sent us home. We came back a week later and they had her painted eye waiting.

If you need to talk or have any questions please feel free to call. My phone number is 916-806-2895 and 530-751-9342. I would be happy to talk to you.

Jessica

[mom23princes]

Hi Heather- I am new to this site. I also have 3 wonderful children...all boys, with our third one being born this past January with right eye micro. I can totally relate to what you posted about what you are having to go through at the ocularist's office. My son, Ethan also knows the office well. As soon as we walk in, he starts crying. He used to hold off until he saw the ocularist himself, but now he starts as soon as we go through the door. My husband and I have to hold him down while he is screaming and crying and the ocularist does his job (getting the conformer in and out). It is HORRIBLE and I have even broken down and started crying myself after one of our visits. Everyone tells me that he will never remember this. Well, thank goodness for that but guess what? I will always remember this! Anyway, I know exactly about the tool you are talking about that your ocularist uses to get the conformer out. I believe it is called a "muscle hook". We have had numerous conformers that didn't want to come out of Ethan's eye. The little suction cup things have NEVER worked to get the conformer out for him. The ocularist has always used the hook to get them out and has even had trouble getting the conformer out with that thing sometimes.

Anyway, I just wanted to say that you are not alone. I can totally relate to what you are going through. I only hope and pray that it will eventually get easier for all of us!

~Renae

[alberto]

Good evening. I´m a teacher in Rio de Janeiro Brazil and I met a couple who have a child with anophtalmia. his name is Pedro Lucas and he is two months old. I ´ve heard about them because they are very poor and we often try to help poor people in our city. When I met Pedro I thought I´d be sad but after talking to his parents and realize that they were so happy,I decided to help them. Pedro is still a very weak child, his arms and legs are very thin. her mother told me he was under the proper weight, but when I first saw him and he held my finger I thought. this guy is a warrior.
I´ve sent an e-mail to NEI and was redirected to this site.
I´d like to learn about anophtalmia and receive e-mails which I will translate to teh parents in order to help them to understand and give a proper treatment to Pedro.

Thanks.

[Jodi]

Alberto

The ican site has a section on "treatment" this may be helpful to Pedro's family.

Take Care,

Jodi

[aprilk24]

Hi Heather! Sorry it took me so long to get back to you. I actually sent an email to Tim, our ocularist to be sure he would be willing to answer some questions. He said he would be more than happy to talk to you. He also said he knows some ocularists in California and may be able to help you find one. The insurance issue is tough. We've been fighting some coverage issues for our conformers too. :mad: Tim's email is tim@midwesteyelab.com. His company has offices in MInnesota, Wisconsin, North Dakota, and South Dakota. Hope this helps you. I'm always looking for more resources. He has been a big comfort to us through our journey. Take Care, April :)